Looking for a surgeon experienced with inguinal and femoral hernias in patients with Ehlers-Danlos syndrome
I had an open, no-mesh Desarda repair in 2015, after it took a very long time to get my hernia diagnosed correctly. The surgeon told me at that time that my abdominal wall was so weak. Last year, in 2025, I was diagnosed with a recurrent right inguinal hernia and a suspected right femoral hernia, and I’m now in extreme pain.
I have hypermobile Ehlers-Danlos syndrome, MCAS, and several other chronic health conditions. I’m really afraid of permanent mesh because of the complications and reactions I’ve heard about, but I also know another tissue repair could fail again. I’m looking for a surgeon experienced with hEDS, recurrent hernias, and alternatives to permanent mesh around California or a state near here if possible. I am willing to travel though.
I also have a cerebrospinal fluid leak and need an epidural blood patch, but that procedure has been delayed while I get this pain evaluated. I really need to address the hernias so I can move forward with my other medical care. Any recommendations or personal experiences would mean so much to me.