Dr. Grace | hEDS, pelvic floor
Region: US
Tuesday 04 August 2026 00:20:19 GMT
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Awaken Joy :
Is it possible that’s why I struggle with orgasming?
2026-08-04 02:37:07
58
justsaying789 :
Strangely, I don't really get hunger or thirst cues. Any idea why?
2026-08-04 00:24:05
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WastelandMama :
I actually never feel like I have to pee until it’s a 911 emergency. And then I’ll pee 3 times in an hour.
2026-08-04 05:10:27
533
Kenzie Scale :
Does anyone else have this issue where they have those “pee shivers” REALLY badly every time they pee? Every time I go, I get a horribly overwhelming whole-body feeling that I can only describe as orgasm-like but COMPLETELY unpleasant. I’m thinking this might be related to hEDS, POTS, or something nerve-related, but I haven’t spoken to my doctor about it yet.
2026-08-04 09:31:40
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Echo :
fyp getting a lil too personal
2026-08-04 02:10:13
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Cuile :
Wtf. I probably have every symptom of this disease. How I got check for eds? 😭😭😭
2026-08-04 15:44:25
23
Georgia :
Okay so I noticed that when I’m constipated and have to push more to poop I end up peeing a lot more than I thought I had in me, could this be a sign? I had to have a poop pushing on me for my bladder to actually empty?
2026-08-04 03:04:01
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errbear🌙 :
I was diagnosed with interstitial cystitis years ago, treatments never seem to work, so I wonder if that’s a misdiagnosis 🤔
2026-08-04 13:06:24
10
Ambert122 :
Me sitting here needing to pee after peeing 7 minutes prior 😂😂
2026-08-04 01:41:13
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mickey UK :
If you have bladder issues with EDS I would definitely recommend watching YouTube video my Professor Vik Khullar he is Urologist at Saint Mary’s imperial College London. He is a specialist in EDS and bladder dysfunction and has written over 300 research papers and been studying it for 30 years. I got a referral to him after watching his video because he talks about histamine reactions in bladders. I was originally seen by local Urologist who did not have knowledge on EDS. I had a cystoscopy because I was having red and white blood cells in my urine but no infection they advised that I had a condition called trigonal metaplasia told me it was normal. I have had bladder issues since I was 19 and I’m now 49. They then discharged me but thankfully I will see Professor Vik Khullar who advised that it was not normal and what had happened was that I’d had an diagnosed UTI and it caused changes in my bladder wall I was put on a six month course of antibiotics and then had an operation to remove the abnormal cells. He advised that people with EDS have a lower level of culture forming unit so urine dip tests don’t work for EDS people and so often UTI are missed. He now also thinks I may have tethered cord syndrome as urodynamic showed I had a neurogenic bladder and I already have a neurogenic bowel and I was also getting leg weakness and low back pain, especially when leaning over I was getting a pulling sensation in my low spine. Apparently this is common in EDS. I am likely to be fitted with a sacral nerve stimulator in my spine.
2026-08-05 08:39:05
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yellowlabradorcrossing :
THE ROOT OF ALL THIS IS HYPERMOBILITY?!! I pee wayyy too much and also overheat from just breathing. The connections make sense but come onnn 😮💨😭
2026-08-04 22:38:06
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Elizabeth Hermes511 :
Thank you!! This explains so much
2026-08-04 15:34:12
5
allisonharrell23 :
But then you try and you can’t
2026-08-06 02:47:08
6
KDL :
Why no ‘just in case’ peeing? If we’re going on a road trip or out where there’s no public bathrooms, I have to lol
2026-08-08 19:51:45
5
NakorsReprieve :
the most common thing I see, including with my edsers (half my patient docket) is restriction in the pubovesical ligaments. this is neurologically incurred, as a 'protective mechanism' as it were, and persists despite hypermoblity, just like the rest of our stiffening issues, even with connective tissue.
2026-08-04 06:30:42
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Rachael :
Pelvic floor tension myalgia therapy and vaginal suppositories shaped my life 💗. I had not realized that standard Kegel exercises were worsening the condition. Love your videos!!!
2026-08-04 16:45:57
10
Tim Storm :
Apparently I got the camel bladder variant.
2026-08-04 02:45:38
5
Sassydec :
It's all so exhausting
2026-08-04 23:47:43
14
flora :
also if you have a uterus pls also check for endometriosis!!! hyper mobility goes hand in hand with endo and can be a piece of the larger puzzle!!!
2026-08-05 18:58:27
5
🦢✨ :
Orr you can hold it for hours
2026-08-06 17:18:18
8
Jessica Phipps :
I’ve really just been out here living with this my whole life not knowing anything about it 😭
2026-08-04 16:21:51
6
sage :
wdym by just incase peeing? i get paranoid that im holding it in and typically when i hold it, it leads to more issues
2026-08-04 02:15:12
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Kvdl :
You forgot the influence of histamine on our bladders.
2026-08-04 17:33:51
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carolina_momma :
I have a stomach question. I eat like a linebacker. I mean A LOT. And I rarely feel full. Is my stomach stretching and making me not feel full?
2026-08-04 03:12:16
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Three Raccoon Trenchcoat :
Ha! I address this with chronic dehydration.
2026-08-04 01:04:25
12
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