How common are bladder problems with ankylosing spondylitis?
I’ve had bladder problems since high school. I’ve variously been told that it’s endometriosis, interstitial cystitis, and the more recent term, bladder pain syndrome. However, hanging around ankylosing spondylitis (AS) forums has me wondering if there’s more to it than just another health problem for the list. Could my bladder problems actually be caused by my spondylitis?
A pattern emerges
The first I knew my bladder problems definitely weren’t normal was when I was in high school and had to use the bathroom constantly. I even had to get a doctor’s note to be able to use the bathroom that frequently at my strict high school. It’s not that I was necessarily making lot of urine, like you’d expect with something serious like diabetes. But if I had anything in my bladder, it would hurt until I went. It also wouldn’t always feel empty afterward, which just added to the frustration and frequent bathroom trips.
I’ve long thought there’s a connection of some kind between my bladder and my back. After all, when my back is bad, my bladder always seems extra irritated. My bladder problems also got bad at a time when my arthritis was getting significantly worse. But which came first? I still don’t know if there’s a way to tell.
The number of times I’ve seen people ask about urinary problems in the AS subreddit has gotten me thinking, though. The questions come from both men and women, newly diagnosed and arthritis veterans. If I’m not the only one connecting my arthritis to my bladder problems, could the connection be real?
It all comes back to the spine
I once asked my rheumatologist if my bladder and back problems could be connected, and she admitted they could. Nothing more specific than that. My urologist also said that when all the nerves come together down there, sometimes signals get mixed up. She was describing how bladder pain syndrome works, though, not something specific to AS.
I finally started looking into this more when I did a brief search of spinal stenosis. My mom’s rheumatologist has told her that her symptoms match spinal stenosis, which is a narrowing of the space around the nerves in the spine. It causes back pain, leg pain, numbness, and bladder problems eerily similar to my own. AS is one of the possible causes of spinal stenosis. AS can also cause other nerve conditions, like cauda equina syndrome, which results from damage to a nerve bundle at the end of the spine.
Important: Numbness, bowel, and bladder problems can also indicate more severe complications. If you’re having severe symptoms, see a doctor immediately to determine the cause, especially if symptom onset is sudden.
Lumbar spinal stenosis causes narrowing in the spine in the low back, and AS causes inflammation there. Could AS irritate those nerves as well? It makes sense, but as far as I can tell, it’s never been studied in people who don’t have severe neurological symptoms from their AS (severe symptoms being bladder and bowel incontinence, numbness, tingling, and other concerning things).
The preliminary evidence
My speculation on what’s causing bladder symptoms in people with AS is just that: speculation from someone who’s not a doctor. This should not be taken as fact. But what should be taken as fact is that people with AS do indeed have more bladder problems than people without. We need more studies to find out why that is, so I don’t just have to speculate.
I found just one study, and unfortunately, urinary symptoms were not the focus. It was largely about sexual dysfunction in men with AS, and urinary tract symptoms were tacked on. Still, the findings were significant: 23% of men with AS had mild to moderate urinary tract symptoms, compared to only 5% of the control (non-AS) group. (For the stats people, this was significant with P=0.0002. Crazy!) Further, 6% of those with AS had severe urinary tract symptoms, compared to only 1% of those without AS. Having urinary symptoms was also associated with more worse AS symptoms.
What this means is that nearly a third of men with AS have urinary symptoms, according to this study, but no one knows why. We have no idea what this data would look like for women, unfortunately, a significant limitation of this study.
(I have some issues with this article. The title is “Sexual dysfunctions and lower urinary tract symptoms in ankylosing spondylitis,” making it sound like this is a study that applies to all people with AS. But then you read it, and they only studied young men. It just feeds into the old stereotype that only young men get AS, which we know now isn’t true.)
How many others are facing this?
Ankylosing spondylitis affects many facets of life and health in ways that we’re only just beginning to understand scientifically. We need a study of urinary problems with AS that encompasses both men and woman, young and old, and it needs to look at urinary symptoms first and foremost, not as an add-on.
People with AS deserve useful treatments and a solid understanding of what they experience with the disease, and it seems like bladder problems are a not-small part of that. The more we understand, the less time we as patients have to spend cycling through specialists looking for answers.
Have you dealt with urinary problems with your AS? What have you been told by doctors? Have you found relief? I’ve found that sometimes, Azo is my only option, but it’s an amazing medication!
Hopefully we can get more answers soon!
-Bri
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10 Comments
Louise light
Well it’s so nice to hear that others have related bladder problems with AS. I to have had long term problems being variously told it’s I.C and irritable bladder! Have had procedures and chemo treatments such as RIMSO that have helped but is a big commitment to go to hospital every week for the treatment.
I have for a long time as a woman thought that there must be a link!
If you hear hooves think horses!!
I do agree that there should be much more research here and if our Rheumatologists would help push it forward all the better.
My Rheumatologist recently said that other patients on sulphasalazine treatment had also noticed an improvement in bladder symptoms, so why no research.
He also mentioned the difference in disease between men and women, in that men tend to suffer greater spinal problems where women have greater enthesitis and organ problems.
I do feel the pieces fit extremely well, but as it is still a struggle for women to get diagnosed early because of the different diagnostic approaches it is therefore no surprise that this bladder problem is also under recognised.
Breeana Vela
Bri,
You make a very compelling point. I have also asked my Dr. about my bladder issues. They all started around the time my AS symptoms started. I am now part of the interstitial cystitis group on FB. Ugh. My rheumatologist said the doctor’s don’t know how they are connected. I have realized over and over that the symptoms I’m having are directly correlated to my AS flares. Oh my goodness, to have both severe back pain and severe bladder pain is debilitating. So, I know it sounds crazy but I have found Aloe Vera helps with my bladder pain. It also helps with my bowel issues as well. This is from someone who has tried every medication they prescribe for bladder pain, nothing worked. If you are curious, go onto Desert Harvest website and purchase their Aloe Vera (pill form). It is concentrated and takes away the pain day to day. It has not completely resolved the pain during a major flare, but reduces it significantly. All things being equal here, there is just not enough research out there to definitely say bladder and AS go hand-in-hand. However, with so many of us being affected it is enough to wonder what the correlation is. I tie it to inflammation in that general region that makes everything in my lower body angry. I do know that Aloe Vera has helped me and it is cheaper overall than the copays I pay for the meds that don’t work. So, why take them?
Breeana
Kimberly Hamby
Okay so been dealing with AS symptoms for almost 7 years now. Started in the SI joints now my middle and upper back, ribcage, and hips are involved. Been brushed off and given other possibilities but nothing has been found. I am female middle aged and my symptoms have gotten worse. 3.5 years ago a rheumatologist said no to RA, Lupus, MS, but possible fibromyalgia. So I started to think maybe but AS is specific to back pain starting at the si joints and morning stiffness.
Mine have become horribly painful. Now last 2 days the feeling of a uti but pain in back where my Bladder is has started. Taking AZO helps but I am seeing the Dr. next week and this time I will get answers and a definite diagnosis. So tired of all this. Cannot stand the urinary urgency when you don’t even need to really go. It feels almost like pressure is doing it, thus thanks to the AS I have yet to be diagnosed with. We must advocate for ourselves to get the help we need.
Heather Swank
I found this site by doing a search for “ankylosing spondylitis difficulty urinating”. I was diagnosed with AS yesterday and I asked my doctor if AS could cause it to be difficult to urinate (an issue I’ve had for the past year), and he said he’d never heard if it but he wouldn’t be surprised because he could sorta wrap his brain around how that might happen. So I thought it was worth researching and here your page comes up! I’m with you, there has to be a correlation.
Cathy S
Heather I also have AS and I’ve been having difficulty urinating for past year
Heather
Thanks for telling me. It could be a sign or symptom of AS then, possibly. Im sorry that you are also having trouble urinating…it is an awful thing to go through for sure!
Anne
There is one medical study I found online that might be worth sharing with your Rheumatologist. https://pubmed.ncbi.nlm.nih.gov/34616760/
I find doctors respond better if you find published medical journal articles to share.
I have AS (not diagnosed until after a sever Reactive Arthritis Episode) and diagnosed IC/BPS as well.
Otis
Thanks for sharing your experiences. I am 62 and was only diagnosed with AS a year ago. At 43 I had a severe case of Reactive Arthritis from eating some bad food. The symptoms lasted for a year then abated. However I was having urinary issues that my urologist was treating for years with only limited success.
I was also having pain and fatigue issues that continued to get worse.
During a precautionary MRI of the lower back areas the Docs discovered that I had AS and had had it for a long time. So my multi symptom complaints were falling into place even though my PCP was trying to tell me that no way I could have AS. So he ordered a HLA 27 blood test which came back positive and he had to admit his error.
It’s not pain for me that’s the worst. They are many ways to manage pain. It’s the embarrassing frequency with which I often have to go. I didn’t realize the AS bladder connections. It seems you fall into this grey area in between your PCP, the urologist and the Rheumatologist.
Kiki Young
Glad to see all of these posts, I have been suffering with bladder issues for many years. I’ve had an AS diagnosis for about 18 years but never linked the two. I had some bladder function tests last week and have been told my bladder is underactive and I need to learn to self catheterise which in turn should help my pain…..we will see what happens
Bonnie
Frequent UTIs since childhood and joint pain started in high school. Just diagnosed with AS (finally!) at 34. So many bladder issues throughout the years. I have random bouts of incontinence now where I have no control of my bladder and flare ups where there is bladder pain but no infection. I think there’s definitely something here.