u/Many-Ad9759

I am a primary patient. When I started MLD of my legs, slight pelvic swelling appeared. I was overall dismissed by my CLT and PCP. An internal/external pelvic ultrasound was ordered and it was “normal”. 

I was then prescribed a pump, with the newest technology, that also covered the pelvic region. Which is supposed to “clear” the area before pumping the legs. My CLT never showed me how to do MLD on myself, instead they gave me low impact exercises to do prior to pumping. 

About a month after starting the pump I ended up with internal & external genital lymphedema which has not subsided after months of pelvic floor/PT/CLT therapy. I also have pelvic lymphedema now.

I am not implying that all pumps can cause genital lymphedema, but do know there is a risk and I assume it is higher for primary patients. The risk was not told to me by my CLT or the pump company so please be extra cautious eventhough the “technology” of the pumps has changed, I assume the risk has not. 

Please view the link. Yes, the study is old, but there is a risk and I am now living with that risk as it was not disclosed to me with the newest, most modern pump. 

https://pubmed.ncbi.nlm.nih.gov/9561507/

EDIT: I won’t disclose what pump I was prescribed. But it does provide pelvic coverage with the legs and it has the “newest” technology. Per the article linked and another article I cannot find again, which was published in the 2000s, it does not matter what type of pump, or how long it is used for in order to put you at risk for genital symptoms. Again, this is a FYI/PSA post.

ADDITIONALLY: if you are prescribed thigh high compression, you also need compression shorts otherwise the fluid is just being pushed into the genital and pelvic region. So many of us are not prescribed shorts and/or are not educated about the lack of shorts potentially causing genital or pelvic lymphedema.

LASTLY: The pump companies are just another version of Big Pharma. They will likely never disclose the risk.

https://www.youtube.com/watch?v=Xq9INYBbZqU

Dr Rockson did not provide an Acebilustat update. In the Q & A he stated “this is not the proper forum for that study to be discussed. We have submitted the first manuscript for publication, so I hope that it will be in print very shortly!”

I personally don’t understand how Phase III isn’t funded by the manufacturer and why he is waiting for additional funding if the study was as successful as he has made it sound over the last few years.

Additionally, it doesn’t seem like anything proposed by the other presenters will be out to the general public for AT LEAST 10 years.

That’s if the individual teams are successful with findings & funding. Many of the items are only in the development stage and only 15-20% of clinical trials make it to phase III.

So to be honest, it was somewhat defeating given the logical timelines by knowing how trials and research really work.