My wife, 61, has been an avid road cyclist for 12 years, and was just diagnosed by MRI with a perineal nodular induration (PNI), also known as cyclist nodule. We want to be sure she gets the best possible medical care to assure she can continue cycling. This is apparently a rare condition, especially for women; and we need her to be evaluated by a doctor experienced with PNI. So far, we have not been able to find one. We live in south Orange County in California, but are willing to travel to assure her the best possible care. It seems a tele-med call may also work, so an experienced PNI doctor can be located anywhere. Thank you so much for any helpful information you can provide. Please feel free to pass this post along to anyone you think may be able to help.
Neal
Hello Neal. I have also been diagnosed with PNI (cyclist hydroma). I am mid fifties and would like to find a surgeon (feel like that might be the best route to berid this thing!), Did you end up finding one. I am in Boulder county Colorado and unable to find someone. It is rare as you say. Would love to hear where you are at with it now? Thanks!
This Case Report has an author from the Department of Orthopedic Surgery, Division of Sports Medicine, University of California San Diego and one from the Dartmouth Geisel School of Medicine in New Hampshire. Reach out to them? Maybe theyâd know someone closer.
Thanks for the quick reply. I have definitely read any/all articles including this but didnât think to reach out to the authors. I might give that a go. Thanks again. Mainly just trying to determine what type of surgeon I need.
So wanted to give an update on my PNI - cyclist hygroma. After being misdiagnosed 3 times, doing an MRI and being told it had to do with my hamstring (which again I had zero pain; and knew it was not my hamstring); I finally had a sports doctor who was willing to lay eyes on it and within seconds was diagnosed with - Cyclist hygroma. YES! That is exactly what it was, I had just wasted 5 months because âeveryoneâ else assumed it was a hamstring and didnât want to actually look at it or listen to me. With that I scheduled a removal with a general surgeon, and since then had my surgery about 10 days ago. The surgery was amazing how smooth it went and It seems they glued it shut (I guess stitches would just tear open maybe(?), but it seems to be healing well from what I can tell. Unfortunately it seems that the stress down there caused an external hemorrhoid, and I had to have that lanced last week and drained in a follow up appt. (that was by far much worse than the actually surgery, etc.). At this point I am 5 days out from that and somewhat back to work in office (on a donut pillow) and taking it easy physically. Even tho my whole life I havenât been picky with bike saddles, I am hoping to get a Gebiomized bike saddle pressure fit in a few weeks to assure I donât aggravate the perennial area again. I will continue to update this post so I can provide as much information as possible.
I had a PNI removed 3 years ago. The initial surgery went well and I had very little, if any discomfort.
Things went pear-shaped about a week after the surgery, once I resumed my regimen of blood thinners. I quickly developed severe bruising, swelling and eventuallyâŚuhhhâŚâleakageâ 
âŚaround my perineum. All this resulted in my having to use womenâs hygiene products and be on full bed rest for about a week. I was also off the bike for about 6 weeks in total.
That said, my experience was very much a result of my personal circumstances (i.e. I need to take blood thinners daily). Had I not had to resume my blood thinner regimen, Iâm sure my recovery would have been swift and without incident.
I did switch to a Specialized Power Mirror saddle once I got back on my trainer and that did seem to provide some additional comfort (I had been a regular Power saddle user prior to the surgery).