It took me 6 years to get diagnosis with SI joint dysfunction which my right SI would lock up and my left SI would then become hypermoble. A year after that I was diagnosed with pelvic floor dysfunction. My own research then led me to understand some of the worse pain I had was coming from pudendal nerve becoming compressed, which also was affected by hypertonic pelvic floor making the pudendal nerve irritated and easy to trigger a extreme pain flare, still working on trying to get better decade plus going through this, thanks for your channel
Thank you Susie and Libby for doing this. We hEDS diagnosed males are out there, and I'd be happy to donate my time and body to being studied if anyone wants to ask.
Thanks for addressing this. I have hEDS. Didn’t know until after a horribly failed hysterectomy which was done with NO suspension. Now recovering from abdominal sacralcopopexy with mesh, sutured rectopexy and perineum repair. I still have the same rectocele. I have hypertonic pelvic floor and probs with BM. I’m doing better after 2nd surgery but now 100 %
I have EDS that runs in my family and the pelvic muscle tension is consistent with what I experience. I’m male so pelvic health isn’t as big a focus as females. Hoping to get it checked out soon.
Thank you so much, for this interview. I have not been diagnosed, but at 64, the pieces of the puzzle are falling into place for me now, that I likely do have some form of this. You are correct about "knowing" being a sort of comfort. I want to offer my observance about myself, that the severity of my symptoms and decline correlate with my exposure to mold, in my house. Problems started when I moved into the house and went away when I moved out for several years. Then came back with a vengeance when I moved back in.
I was 48 when I got diagnosed and had to learn about myself first and seek out a diagnosis. I had multiple issues and was gaslit. Told it was in my head, hypochondria, etc :(
How often do females with EDS have chronic tight pelvic floor issues? I have several signs of EDS but have diagnosed tight pelvic floor but that may be caused by my endo pain.
I've tried a few times to get diagnosed. My sister has it, multiple massage therapists and physiotherapists have said it seems like I have it. Docs will not test me
Do not ask for genetic test yet. Look up the Beighton Scale and test yourself against it, then take that information to your doctor and telling them you have it in the family. Good luck.
It took me 6 years to get diagnosis with SI joint dysfunction which my right SI would lock up and my left SI would then become hypermoble. A year after that I was diagnosed with pelvic floor dysfunction. My own research then led me to understand some of the worse pain I had was coming from pudendal nerve becoming compressed, which also was affected by hypertonic pelvic floor making the pudendal nerve irritated and easy to trigger a extreme pain flare, still working on trying to get better decade plus going through this, thanks for your channel
Thank you Susie and Libby for doing this. We hEDS diagnosed males are out there, and I'd be happy to donate my time and body to being studied if anyone wants to ask.
how has this changed over the years?how has heds affected you?
Thanks for addressing this. I have hEDS. Didn’t know until after a horribly failed hysterectomy which was done with NO suspension. Now recovering from abdominal sacralcopopexy with mesh, sutured rectopexy and perineum repair. I still have the same rectocele. I have hypertonic pelvic floor and probs with BM. I’m doing better after 2nd surgery but now 100 %
What a breath of fresh air, confirmation, and even more meaningful information. Thank you so much. Feel more hopeful.
I have EDS that runs in my family and the pelvic muscle tension is consistent with what I experience. I’m male so pelvic health isn’t as big a focus as females. Hoping to get it checked out soon.
Thank you so much for reposting this, Dr. Susie! It is greatly appreciated!
This is some really impressive and important information that really makes me understand now the problems I’m having x
Thank you so much, for this interview. I have not been diagnosed, but at 64, the pieces of the puzzle are falling into place for me now, that I likely do have some form of this. You are correct about "knowing" being a sort of comfort.
I want to offer my observance about myself, that the severity of my symptoms and decline correlate with my exposure to mold, in my house. Problems started when I moved into the house and went away when I moved out for several years. Then came back with a vengeance when I moved back in.
this is really a great conversation! underrated video
I was 48 when I got diagnosed and had to learn about myself first and seek out a diagnosis. I had multiple issues and was gaslit. Told it was in my head, hypochondria, etc :(
How often do females with EDS have chronic tight pelvic floor issues? I have several signs of EDS but have diagnosed tight pelvic floor but that may be caused by my endo pain.
I've tried a few times to get diagnosed. My sister has it, multiple massage therapists and physiotherapists have said it seems like I have it. Docs will not test me
Do not ask for genetic test yet. Look up the Beighton Scale and test yourself against it, then take that information to your doctor and telling them you have it in the family. Good luck.
does calcium blockers for high blood pressure effect heds ?
Ing I have long arms and didn’t know this. And fingers. I have hug hands and arm me th for my 5 ft 5 frame and my arms are longer than my legs
I’m waiting 3 years for genetic testing waitlist