Thank you for these videos, Belinda!

Hi Belinda, Thanks for your video, I have always found it hard to find any info on PVNS, particularly personal experiences. I am also one of the other '50 Aussies' who suffers from this disease. I just had orthopaedic surgery on my right knee less than a week ago in Melbourne, the pain you experience after surgery is something else! I'm glad to hear that you could eventually eradicate it permanently. 🙃 Cheers.

Thank you for sharing. I was terrified when diagnosed and so few knew what to do...

I've had pvns since I was nine (I'm 12 now) and at first they thought it was juvenile arthritis, so that's how how they treated it. I had a bunch of arthritis injections and stuff, but the fluid was coming out bloody. My doctor figured out what it was and I went in for a biopsy on the left knee, and they saw I had diffuse PVNS, so yeah that was fun. I had my 5th surgery in August and I have to have surgery every 6 months, but it usually happens every 8 months. Luckily we caught it early on cause my best friend had noticed my knee was swollen (thank you Caitlin lol) and I am VERY grateful that I don't have as much pain as lots of others do. I was going to do radiation, but my surgeon got word that that was getting rid of it, but I would come back as cancer sooooo😬 that didn't happen. I'm really happy that this doesn't really affect my every day life, besides some pain during PE, but nothing really bad at all. My tumbling/cheerleading coach and teammates have been super helpful and supportive of me getting better after surgery and helping me get back into shape. This is just my story I wanted to share😁

It took me 7 years and a bunch of doctor visits to finally get the right diagnosis.

I am suffering from PVNS in knee since 4 years, I hope you get cured soon and myself as well.

I have It in my knee. Since I was 13, now 25. They did remove it and now it's growing back. Oh the joys of pvns!

I was diagnosed with PVNS on Monday and am struggling with it. I’m 25. They won’t operate yet as the lump isn’t huge and because my cartilage tear isn’t so terrible. I can’t work, I can’t work. I’m miserable! Not that I’m happy that anyone else has this, but I’m glad I’m not the only one.

I have it on my left hip, I found out just last year I am 13. I had two surgeries already and its not that bad after the second surgery but it hurts when i do a lot of work... It's very confusing to me but idk what to say or think about it..

So I have a pvs in my knee I have a 6 surgery and so my thee surgery is want will but my last surgery I have so there is five I go to the icu for a little bit but my six surgery I have a thing on my knee knee replacement surgery. So have a doctors appointment on Thursday.

I have PVNS. Doctor find it last week and my foot pain is like hell. I cannot walking normal and I need pain. They wanted open it and watching how bad is it. I m afraid a lot. I get 2007 psoriasis and now this. I m very tired to been all time sick but I trying been positive person. I don't been this moment work but I hope I can return there in the future. I just want this pain stop and all get out my foot. I m now 35 years old. :(

My husband has PVNS, he's 42 and they won't do hip replacement yet, he's miserable, were actually at the oncologist right now to see what oral meds he can do. This is so hard to watch him go through this, 😢😢😢

Now they want him on chemo that only has a 20-30% success rate, this is overwhelming!!!

What is the cause?