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Real members of MySpondylitisTeam have posted questions and answers that support our community guidelines, and should not be taken as medical advice. Looking for the latest medically reviewed content by doctors and experts? Visit our resource section.

Fibrolipoma with A.S.

A MySpondylitisTeam Member asked a question 💭
Corpus Christi, TX

I've asked this before when I had two surgeries for lipoma removal in lumbar and bilateral hips within 3 months. I had my third surgery for exact same spots but additional w 2 more on my rib cage. I was still in post op recovery when the lumbar spine mass came back again in 2 weeks. The surgeon wanted to do the 4th surgery a month later. I did decline it bc no one could give me a true Diagnosis on why this keeps happening. Now I have over 30 masses or lumps throughout my entire body. It's… read more

July 27
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Be the first to react
A MySpondylitisTeam Member

I've got spondy, but things like you are describing fall within my other conditions: EDS, POTS, MCAS. There may be more to the story in your case. Unfortunately, there is no medicine treatment for my conditions (unable to make collagen correctly) and I cope the best I can with tumors or dermatology issues. 🤷🏼‍♂️

July 27
MySpondylitisTeam

What a frustrating and exhausting journey — being bounced between doctors while dealing with this on top of AS is genuinely awful, and your feelings of distrust after that MD Anderson experience are completely understandable.

While fibrolipomas aren't a widely documented direct comorbidity of AS, chronic inflammation from Show Full Answer

What a frustrating and exhausting journey — being bounced between doctors while dealing with this on top of AS is genuinely awful, and your feelings of distrust after that MD Anderson experience are completely understandable.

While fibrolipomas aren't a widely documented direct comorbidity of AS, chronic inflammation from AS can affect soft tissues throughout the body. Some MySpondylitisTeam members have reported unexplained lumps and soft tissue changes, though experiences vary widely. A few things worth considering as next steps:

- Push for the full body scan — despite the frustration, imaging is genuinely the best way to document everything at once and get answers
- Request a second opinion from a different sarcoma or soft tissue specialist, not just a dermatologist or general surgeon
- Ask specifically about a genetic workup — multiple recurring lipomas can sometimes have an underlying cause worth investigating
- Bring all surgical pathology reports to every appointment and insist they are reviewed before the visit

You deserve a doctor who takes this seriously. Don't stop advocating for yourself — you clearly know your body better than anyone in that room.

July 27

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