Tuesday, February 28, 2017


I wrote the post below a couple of weeks ago. At the time, I'd just developed some unusual pain and changes to my skin, and had had some abnormal test results, so was starting down the journey that goes with that. From there, things moved pretty quickly. An ultrasound showed what looked like a lipoma (a benign, fatty tumor) just above my hip. Usually these are harmless, but there were some abnormalities so I was referred to a surgeon. Within days I had received an appointment time for the surgery.

It all seemed super simple. It would be an easy procedure, all over in 45 minutes, and I would only need local anesthetic, rather than general. I kind of couldn't believe that for once I had something easily diagnoseable, and even better easily fixable. While the abnormalities seemed a bit worrying, the prospect of the pain going away was enough to calm my concerns. There was a part of me that was even looking forward to getting it all over with.  

But when has anything to do with my health ever been simple?

I saw the surgeon today, and when he and the nurse saw the indentation on my skin, they both said variations of "Oh... that's not right," and very quickly came to the conclusion that this is not a lipoma. If it is a tumor, it would have to be a more nefarious form, but the more likely diagnosis is that some of my tissue has died (fat necrosis.)

There are a few possible causes for this, all of which are somewhat worrying.

Fat necrosis is sometimes caused by injuries. I do injure myself a lot - clumsy + issues caused by my illnesses - but I don't remember anything significant enough to have caused this. Given my sleep disorder, there is a possibility that I hurt myself in my sleep. I think this is unlikely, as I'm sure I would have remember something or at least found some evidence of an accident in the morning. If it was a sleep accident, then it's concerning for several reasons. 

I remembered today that I did have a really nasty black mystery bruise in that area a while back. It's possible that was from an injury I don't remember getting, or it could perhaps have been the early stages of the tissue dying, and I didn't recognise it for what it was at the time.

Another possibility the surgeon suggested is that it could be from having steroid injections. It's been a year since I had one, and I'm not sure if it was on the same side, so I'm dubious about this being the cause. If it is, then I'm guessing that may mean I'll have to drop steroids as a treatment option (I can't take them orally) and it does make me a bit worried about all the other injections I take on a regular basis. 

The final option the surgeon suggested was that it could be down to some autoimmune/lupus activity... not exactly ideal as this would raise the question of whether it's going to happen again.

For now, I don't know. Like everything, I may not get a clear answer as to what caused this. I've been referred for an MRI, and possibly a biopsy after that, to firmly rule out the possibility of a tumor. If it is necrosis, the surgeon has advised not removing the dead tissue as this would be a bigger surgery, and would leave significant scarring. While I feel self-conscious about the way it looks at the moment, I agree that it's not worth risking it ending up looking worse. I'm not happy that this means the pain won't be going away, but I have lived with pain to greater or lesser degree for most of my life. I just hope that it eases up a bit, so that walking isn't so uncomfortable.

I don't really know how I feel about all of this. Many of the same feelings I had when I wrote that last post have resurfaced, but I feel like I'm processing them better than I did two weeks ago, though I have been dramatically yelling "A part of me has died!" then having bursts of laughing and crying at the same time. Like I said at the end of my last post, this will pass. It will pass, it will pass, it will pass, and at the meantime I'll let myself enjoy the humour of the melodrama.

Thanks for reading,
Little Miss Autoimmune.  

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