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Hypermobile EDS of the Bladder: Seeking Advice

Jlync80

607d

diagnosed w hypermobile EDS of bladder. wondering if I have in bladder I have in general. I don't know a soul w eds. I bruise easily since birth so does my mother. was very flexable, still am w as much joint issues I do.

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18

18

Generalized pain

Cough

Urticaria.

Ehlers-Danlos Syndrome (EDS)

Chronic Generalized pain

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    • Jlync80

      605d

      If u look in my issues I have so many. Fibro, CFS, stenosis, DDD, authritis everywhere, bone spurs n knees feet hands, I have IBS GERD. I have been given so many antibiotics I am now getting hives from them, always sick with something growing up and Lots of Uri and bronchitis. I have migraine daily with white matter lesions. The list goes on and on and on. Now I'm just degenerating slowly. Last 3 years have been horrible for me but had issues most my whole life. Sounds not good for me.

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      • fibrozombie

        605d

        @Jlync80 I'm sorry. I've had problems all my life too. šŸ˜„ Are you being treated for any of those things?

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        • Jlync80

          603d

          @fibrozombie they are treating me for Fibro and pain that's about it. Still in early stages of diagnosis and treatment. Just received the hypermobile bladder diagnosis. But I fit so much of the eds criteria. Drs take forever 2 do anything. See my primary tomorrow 2 discuss what's been going on. Probably more referrals after.

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    • Jlync80

      607d

      What is the prognosis for this? What can they do for it? How bad am I gonna get? If my joints are this bad at my age how quickly are they going 2 deteriorate? Already looking at surgery for stenosis and bladder.

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      • fibrozombie

        606d

        @Jlync80 It really varies I think. I had surgery on both knees because they dislocated so often there was bone floating around in one of my kneecaps in an xray. They're better now because they don't dislocate but I now also have l arthritis in them so they're still painful. I've had a bunch of other illnesses come from it along with my Fibromyalgia. They also think I may have a different form of EDS because my heart has been acting up. Then I know of people that have it so mildly they never knew they had it. It's a big scale.

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    • fibrozombie

      607d

      I have EDS and Interstitial Cystitis. Maybe they're connected.

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    • Jlync80

      607d

      Ugg.... Orlando or Jax, shud have known. 2hr drive either way. Sigh

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    • Nonamae

      607d

      If you need more specific let me know. Iā€™m about to head to a doctor but I can look after

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    • Jlync80

      607d

      My urologist did say that having babies should not cause those issues that is not normal.

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      • Nonamae

        607d

        @Jlync80 Iā€™m 42 and have a 6 year old. Iā€™ll have to ask my Eds doctor about it next time I see him. I go to the obgyn I think next month having issues with that too. Not sure if that is Eds related Iā€™m pretty new to this it diagnosed about a year ago. There is a list of eds knowable doctors I can see if I can find the link

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        • Jlync80

          607d

          @Nonamae thx so much. I'm n NSB Florida

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    • Nonamae

      607d

      I had a lot of kidney and bladder infections as a kid. A few really bad ones where they but in a catheter. I remember being on antibiotics a lot for it and In a lot of pain. I still get them as an adult but not as often. I also feel like I have to pee all the time. I also drip sometimes especially if I laugh or sneeze , I have 3 kids but this has happened all my life.

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      • Jlync80

        607d

        @Nonamae yeah I am 42 and I have a 3-year-old I've been having issues since I had her so I chalked it up to having a baby at my age. After 3 years though it hasn't gone away so I mentioned it and they sent me to a urologist and I found that out. They tried to diagnose me with a severe prolapse first that came from the arnp, I demanded to have the doctor check me and he said definitely not a prolapse. I've spoken with my neurologist and pain Management about the eds and it doesn't seem to matter to them. All the symptoms are there and I'm tired of being misdiagnosed all these years I've had so many diagnosis.

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    • Jlync80

      607d

      My symptoms now are feeling I gotta pee all the time but does not feel like an infection ever. I drip when coughing or sneezing, sometimes for no reason. I feel full all the time and hardly anything 2 pee out but get great relief when I do. I see allot of bathrooms dailyšŸ˜„

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    • Jlync80

      607d

      I also had kidney and bladder issues as a kid. I was in hospital 3 weeks due 2 enlarged kidney, kept getting infections so put me on antibiotics a few years so I didn't have 2 have a transplant. I grew into my kidney but bladder infection my whole life. I been wondering the same. I have horrible pain and all my joints have spurs I have spinal stenosis and a few other stenosis. I'm always stiff all over. Been told all symptoms are Fibro related now I'm questioning. I have CFS and on meds 2 get me up and going everyday. Then have 2 smoke at night 2 sleep. I have my medical marijuana card. I'm only 42 yrs old and I have a 3yr old. I need 2 get this fixed soon. I have allot of family that needs me really bad.

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    • Nonamae

      607d

      Iā€™m just curious if you donā€™t mind what are some symptoms in the bladder that you experience. I had bladder and kidney issues as a kid and Iā€™m wondering if maybe it was Eds related. From what I understand it effects all connective tissues usually

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ā˜ This content is generated by our users and it is not a substitute for professional medical advice. Please consult with your physician before making any medical decision

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