Brief Answer: Urinary issues a poorly understood in EDs and JHS Detailed Answer: Hi, I have gone through your history and I wish i could tell you that i understand how you feel. But the fact of the matter is this is a pretty poorly understood aspect of the management of EDS. In my practice I have come across a few patients with Ehlers-Danlos (EDS), but i was treating them from a neurological and spinal issues point of view. But I do know this from experience. EDS can cause pressure symptoms on... and incomplete emptying of... the bladder. The main problem in EDS or in any Hypermobility syndrome is that the elastic tissues inside the ligaments and tendons (and even the muscles) are not being woven together correctly. There are a couple of reasons why this may happen, but the net effect is the same. The tissues tend to stretch and tear alot more easily than they should. Now in women this is especially problematic because they're lucky enough to have a uterus that normally sits right on top of the bladder. In normal people, the tethers that connect the uterus to the abdominal wall and pelvic floor are going to hold it up and prevent it from pressing down on the bladder. Those tethers (ligaments and tedons and muscles) do get taxed quite badly in a pregnant womans case, so that's why you see pregnant women who have a feeling of fullness in the bladder all the time. The uterus is just weighing down on it. I suspect that in your case, even though your uterus is at a nonpregnant size and is not SUPPOSED to be pressing down on anything, the tendons thethering it up have grown lax due to the hypermobility issue / EDS. There are very few treatments for this and it is a woefully under diagnosed issue. I have observed that women with EDS normally do very well, from an incontinence point of view as well as from a lumbar spinal point of view, if they try and do PELVIC FLOOR STRENGTHENING (PFS) exercises. Those would be best done by a physiotherapist. I see that you have gone to one in the recent past? Did they do PFS? Lastly, the possibility of in-organic causes (that this is all in your head), That is a very brave thing for you to postulate and face on your own. I am not willing to go that route until the EDS diagnosis has been completely ruled out though. For now, lets blames the disease until there is no disease left to blame. So, i really hope this helps. I know, i'm not a urologist. But I have experience with patients suffering from EDS and I have been part of many multispecialty teams treating such patients. Talk to me about the Physical therapy you have done in the past. Would you be willing to try again? Genetic diseases are easily tested for but treatments are horrendous. I do not believe there is any scope for long term medication here and I'd rather keep you off of any psyche meds and anti-anxiety pills if at all possible. Feel free to follow-up, Take Care Vin PS, Here is a link to some data i found on the subject of EDS and urinary issues. http://www.edhs.info/#!test/ciqc

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