Anyone had lipoatrophy?

[Tiggywoos]

Hi everyone bit anxious about posting but everyone on this forum sounds so lovely and caring I thought I would give it a go 😊.

In March this year I had to have an emergency steriod injection in my buttock . The dermatologist didn’t mention any side effects . In August I noticed a small dent in my buttock . I called GP and he said “ah yes just google lipoatrophy that’s what it will be” .

Fast forward to now and the “dent” is now 5cm wide and deep enough to store a golf ball .However , every time I mention it it becomes the elephant in the room . Health professionals shrug their shoulders when I ask how much bigger it will grow .

Has anyone else experienced this ?

Thanks 🙏 ever so xxxx

[Spanielmadlady]

Hi.sorry I cant help with your issue but I just wanted to say dont be anxious about asking here.everyone is very caring and supportive and i haven't come across anyone yet who judges or says anything unkind.i hope you get some answers to your problem.take care xxx

[Tiggywoos in reply to Spanielmadlady]

Thank you so much . This forum is very comforting as well as being an incredible source of information xx

[suzannah16]

that maybe what I have. I have had a few of those injections and recently noticed a dent on one cheek. I just thought I was lopsided. off now to google it.

[Tiggywoos in reply to suzannah16]

That’s the problem with google and lipoatrophy . There is so little UK information available and to confuse the issue even more there is a type of lupus called profundus that can cause “dents” too . Any accurate information would be welcomed ! X

[Foggyme in reply to Tiggywoos]

Welcome Tiggywoos and well done for being brave and posting...it's quite scary when new - when I did my first post I broke out in a cold sweat and then did a worry wait 'cause I'd got no idea if I'd get any responses...or what they’d be. People here were fantastic...and have been ever since.

I've no idea about lipoatrophy but here's a link to some information I found...may be useful and give pointers to other things you could look up...

pcds.org.uk/clinical-guidan...

Hope you enjoy being here... folks are really lovely and I've learnt so much from reading about and sharing experiences with others 🙂x

[Tiggywoos in reply to Foggyme]

Hi Foggyme

Really kind of you to respond and I did think gosh everyone on here is so kind which is just what we need !

The link is great thank you and blimey it’s a bit of minefield . I know many people on here go through the mill trying to get diagnosis and you all understand it’s a frustrating and long journey .

I’m waiting for reply from dermatologist who looked at the lipoatrophy a few weeks ago to see what she says .

I’ve been diagnosed and undiagnosed about 4 times since March . Lupus , vasculitis , AH, MCTD. Rheumatologist thought lupus as all symptoms and positive anti cardiolipin antibodies and low C3 . Then retests come back negative and says I need talking therapies as nothing wrong !

Just go round in circles ..

This forum keeps me going and gives me strength to find answers so thank you 🙏 xxx

Ps sorry this is long but it is nice to get off chest !

[suzannah16 in reply to Tiggywoos]

after doing a bit of google searching I found that renal failure can cause it on your face. I have had "prominent" cheek bones since gastro surgery 10 years ago. I looked skeletal on my face for months after and have since padded out a little but my face still has "dents". I now also have kidney problems due to tissue scars from stone removal. more questions next time I get to talk to a doctor. my lupus was diagnosed not long after the surgery so lupus profundus could also be a possibility. thanks, I'd never heard of this before.

[Tiggywoos in reply to suzannah16]

Hi Suzannah

Thank you for taking the time to reply . Gosh you’ve been through the mill 😖. Having knowledge helps us to feel a bit more in control doesn’t it . Good luck with speaking to Dr and let me know how you get on .

[suzannah16 in reply to Tiggywoos]

If I ever get to speak to a doctor. GP has gone awol since march and renal and rheumy one phone call each. yes i've been through the mill and been chewed up and spat out the other end. still learning new things all the time, things that doctors just forget to mention like your lipoatrophy. I saw it can affect the soles of your feet and make them sore because with the fat loss there is less padding. I have had painful feet for years and get constantly brushed off by doctors this lipo thing could explain that too. even if there is no cure for things I find it helps if you can just get a name for it so that you don't feel it's all in your head.

[svfarmer]

Hi Tiggywoos I had a cat called Tiggywoo when I was a child, a beautiful black one.

Funny you should mention this dent in your buttock but I too have 2 quite large dents in one of my buttocks and had wondered for ages why they were there, didn’t put 2 & 2 together- I have had a couple of steroids injections in them so am now guessing I have them from the steroids, didn’t know this was a thing until you’ve just posted - the dents haven’t got any worse .

Best wishes x

[Tiggywoos]

Oh I love a black cat but you don’t see many ! He’s my baby and such good company 😊.

I am sorry to hear about your “dents” and I’m guessing like me you weren’t told that can happen ? I just think it’s really bad we aren’t told it’s a side effect . I know to the consultants it’s probably no big deal but it’s something else for us to deal with that we could do without 😳.

Take good care xx

[Oshgosh]

Welcome to the forum.

[Krazykat26]

Hi Tiggywoos..welcome to the group 🤗💐 n well done for getting up the courage to post 🙌

Can't help with the lipoatrophy but u r definitely in the right place here!! We all live with autoimmune disease 24/7 n it's a fabulous site for getting advice, info n tips on how to cope etc, as well as a good giggle!! You're not alone!! 🌈😽😽Xx

[Tiggywoos in reply to Krazykat26]

Ah thank you Krazykat.... I’ve “stalked” this forum for ages and already picked up lots of useful gems 😁🙏. Amazing to be around like minded people who understand 😻xx

[Tiggywoos]

I kid you not the dermatologist who did mine said “I’m really good at injections “ 😳. My mum remembered him saying it . There should be an information leaflet they give patients to warn about the side effects 🤔

[Foggyme]

Yes...I agree...and precisely why I left the link to information for Tiggywoos 🙂.

[heatherevans28]

I have one but was warned about the possibility of it before having the injection. It was worth the risk for me as I was in a nasty flare. I was warned each time I've had one to be honest but the dent has only happened once. It stopped growing and hasn't changed in years.

[Tiggywoos in reply to heatherevans28]

Thank you Heather . Do you mind me asking how big your dent is ?