Hypermobility and the Pelvic Floor - Dr. John Heusinkveld - 2022

[@Craphithefan]

That's my doctor 😊. Dr. Heusinkveld is amazing!

[@conniegarvie]

I had surgery in 1997 for uterine prolapse, cystocele and rectocele. I wish he'd shown a serious showing what that looks like! This was after I had given birth to 4 premature babies (all survived). I was only 38 years old. I wasn't diagnosed until just after my 60th birthday (2019).I experience bladder leaks and incontinence.

[@EmmaChasteen-g7z]

Nobody told me that i had a hypermobile pelvic floor, a uterine prolapse, until the day i had a hysterectomy. Like 2 years out ive got...cystocele, rectocele, i don't want any failed surgeries so im just concerned with my hygiene. I have ehlers danlos, possibly classical type. My urethra is hypermobile. My anal tissue weak. My vaginal walls have no support. Sometimes I leak, i can't hold all the time and I'm only 31. When i was 18 i worked at a nursing home and one residents tragic quality of life and suffering has stuck with me. Even if the surgeries are better now, im scared of a surgery that would possibly have complications. There's not much agency for me in terms of where I can go to get care. Bbecause im on disability and i can't afford staying in a hotel. I can’t guarantee ill get an eds aware dr. I heard it heeds to be repeated over and over. I have some issues but i don't believe that invasive options are right for me right now. Im incontinent. I never had kids myself, and women with multiple kids probably have a tighter pelvic floor than me sometimes. There's a shortage in post-op pain plans that consider the patients quality of life. If i knew where ro go id want to learn specifically what procedure they would recommend. I might want to get a few opinions but I'm afraid if it gets worse then i would want it fixed. I know prolapses are very common, but eds prolapses don't all occur the same way birthing does. It's more common for childfree women with eds than other childfeee women. We often have a different anatomy much earlier on. if the symptoms are constant, then I reserve the right to change my mind. But if i can get comfortable, then I will get by. I found something that helps relax my overactive nervous system on this area which was a surprise after failing traditional muscle relaxers somehow a psych med, helps back spasms and pelvin floor. Took me over 10 years to find peace in my body. Ptsd also plays a role. I finally had another visit with an angel unicorn who has helped me with my multimodal plans. I finally feel like if i need something and it helps then they try to get me help. I know healthcare is broken. I just wanna buy some time. Maybe consider surgery later in life. I'll learn about the options and Make an informed decision. Ive been theu 3 pelvic floor PTs and they can only do so much. I have to do the work. So help me as a trauma survivor it's hard to even be in my body and think about those parts. It's a lot of work with my comorbidities and mental health mixed in. Being proactive and wanting to get bettet are important to me.

[@elizabethvandeventer5487]

Why don’t these Doctors talk to us, The women with EDS, we’ll be more than happy to discuss all of our symptoms with you. Yes, physical therapy helps, if you have a therapist that will actually try to help you. I’ve been to over 6 or 7 different therapist groups, they've sent me home with a walker because they pulled my pelvis out of place and couldn’t get it back in! It was the worst experience ever!!

[@elizabethvandeventer5487]

There are so many different areas that are bad in me that you may as well say it affects my whole body! It’s absolutely horrible and nobody understands the pain that I experience every day!

[@brynniefresh9746]

real

[@patriciafoster5001]

I would love to share my experience with you on the two bladder mesh surgeries I’ve had to endure. I was not yet diagnosed with Ehlers-Danlos syndrome when I had bladder prolapse surgery, which never healed properly, and I had to have a second surgery. So if somebody would please contact me, by commenting here, I would love to share my story. I think it’s a great idea.

[@UncommonEyes]

UofA ‘82 wish I could be in Tucson again to have this man for my UOBGYN, though do have a pretty good one. Question: Dr. H, do you have any experience with what I think is a fairly new device called Elitone for women with hEDS and prolapse?

[@BachBeethovenBerg]

Can men with EDS also suffer from pelvic organ prolapse?

[@TheEhlersDanlosSociety]

Hello! Please reach out to our helpline with your question www.ehlers-danlos.com/eds-helpline/

[@GLGC688]

Yes they can

[@ashm676]

Had to laugh at "we don't know" but really its 2023, lets invent, lets progress in all areas of life