Does anyone also suffer with Osteitis Pubis?
Hello,
I am hoping for a referral to a Rheumatologist for more investigations (I am not diagnosed with AS) but my MRI scan has showed inflammation in my lumbar spine, mild sacroilitis, but severe Osteitis Pubis, which for me was a complete shock as I don’t get any pain there at all, but I have just read that a small amount of people do get that.
I personally believe that I have AS, I have all of the symptoms, but my blood test was negative for inflammation markers which my GP said he would expect to be raised. I am going for the gene blood test this afternoon which I’m hoping is positive, but I’m a little worried if it’s negative in case I don’t get the referral because of the blood results.
Does anyone else have Osteitis Pubis aswell? Do a lot of people diagnosed also have negative bloods? Is it worth paying for private treatment?
Me! I was diagnosed based on symptoms and inflammation in the SIJ’s. Since the MRI I have started with osteitis pubis so didn’t show it. Rheum said can become inflammed. GP’s dismissed my pain for 7 years but MSK practitioner with an interest in axspa pushed for rheum referral.
I'm sorry to hear you have such pain. I can't image how difficult it is to be mobile while trying to manage osteitis pubis. I have similar pain in other areas of the body, including the pelvis but not between the left and right pubic bones. I hope that you find an effective treatment plan and the inflammation subsides. Thoughtfully, Rebecca (Team member)
Hi
,
I just wanted to piggyback on Rebecca's comment- diagnosing AS/AxSpA can be quite challenging. Some people endure many doctor visits and tests over several years before they get an accurate diagnosis. I thought I would include this link as well that may add some additional information: https://axialspondyloarthritis.net/diagnosis
In the meantime, I do hope others in the community will chime in on their personal experiences with osteitis pubis.
All my best, Doreen (Team Member)Welcome to our site,
. Thanks for posting this question. Although I have not been afflicted with osteitis pubis, I utterly understand the pelvic pain and complications it can represent for an individual diagnosed with inflammatory arthritis (SpA). I did search our site for osteitis pubis but failed to locate the mention of it among the accumulation of articles and topics. I then went to search the web and found a few instances (medical studies) where men and women diagnosed with AS were shown to be suffering from osteitis pubis, seen on imaging (MRI). This is the first time I've heard mention of this condition related to spondyloarthritis. I learn something new every day about this disease. I hope that you find answers from the testing and with referral to a rheumatologist for treatment. Also, here's a link to information on HLA-B27 on our site. It may offer insight into the use of the gene in diagnosis of this inflammatory arthritis. https://axialspondyloarthritis.net/understand-test-results I wish you well and hope to see more of you around. We are here to help. Contact us anytime. Warmly - Rebecca (community moderator)
