u/VisibleAction3478

I have dysautonomia, EDS, and endometriosis. Honestly, I struggle with a lot of things in general, but lately this issue has become especially difficult, among others. A few days ago I completely stopped being able to urinate and had to be catheterized. This has happened to me before, years ago. I’ve always struggled to urinate properly, I go little by little, have to push/strain, or depend on certain positions, but I never really empty my bladder normally.

About a year ago (when we finally reached the dysautonomia diagnosis as many of you probably know, it can take forever because so many doctors lack information about these conditions), I had already started developing urinary issues. I’ve had episodes where I simply cannot urinate at all.

A year ago my neurologist told me I needed to get a urodynamic study done, but I was too scared and avoided it. I know that was a mistake, but the problem isn’t just the test itself, even when they try to catheterize me, it can take them hours because everything down there seems to completely close up, and they end up hurting me a lot. That fear made me avoid dealing with it until now, after another retention episode. They’re now scheduling the urodynamic study.

I would really like to hear your experiences. Do any of you also deal with urinary symptoms like this? My doctors have told me that dysautonomia and EDS can cause bladder and urinary tract dysfunction, but I honestly don’t know how far this could progress. Given how severe my health issues already are, I’m aware I could potentially end up needing a urostomy someday.

The worst part is that my intestines are also a huge problem. Thankfully I have a great gastroenterologist helping me with that. I suffer from horrible constipation, truly awful, A NIGHTMARE, and sometimes not even medication helps, but I’m getting off topic...

Could you please share your experiences with urinary problems? How do you live with it? Have you gotten answers about what part of the urinary system is malfunctioning? Have you found anything that helps? And even if you haven’t found solutions, I’d still really appreciate hearing from you. I feel very alone and hopeless right now.

Also, if any of you have had a urodynamic study done, I would be extremely grateful if you could tell me about your experience with it.

Living with this is so difficult. Thank you for reading

I have dysautonomia, EDS, and endometriosis. Honestly, I struggle with a lot of things in general, but lately this issue has become especially difficult, among others. A few days ago I completely stopped being able to urinate and had to be catheterized. This has happened to me before, years ago. I’ve always struggled to urinate properly, I go little by little, have to push/strain, or depend on certain positions, but I never really empty my bladder normally.

About a year ago (when we finally reached the dysautonomia diagnosis as many of you probably know, it can take forever because so many doctors lack information about these conditions), I had already started developing urinary issues. I’ve had episodes where I simply cannot urinate at all.

A year ago my neurologist told me I needed to get a urodynamic study done, but I was too scared and avoided it. I know that was a mistake, but the problem isn’t just the test itself, even when they try to catheterize me, it can take them hours because everything down there seems to completely close up, and they end up hurting me a lot. That fear made me avoid dealing with it until now, after another retention episode. They’re now scheduling the urodynamic study.

I would really like to hear your experiences. Do any of you also deal with urinary symptoms like this? My doctors have told me that dysautonomia and EDS can cause bladder and urinary tract dysfunction, but I honestly don’t know how far this could progress. Given how severe my health issues already are, I’m aware I could potentially end up needing a urostomy someday.

The worst part is that my intestines are also a huge problem. Thankfully I have a great gastroenterologist helping me with that. I suffer from horrible constipation, truly awful, A NIGHTMARE, and sometimes not even medication helps, but I’m getting off topic...

Could you please share your experiences with urinary problems? How do you live with it? Have you gotten answers about what part of the urinary system is malfunctioning? Have you found anything that helps? And even if you haven’t found solutions, I’d still really appreciate hearing from you. I feel very alone and hopeless right now.

Also, if any of you have had a urodynamic study done, I would be extremely grateful if you could tell me about your experience with it.

Living with this is so difficult. Thank you for reading

I have dysautonomia, EDS, and endometriosis. Honestly, I struggle with a lot of things in general, but lately this issue has become especially difficult, among others. A few days ago I completely stopped being able to urinate and had to be catheterized. This has happened to me before, years ago. I’ve always struggled to urinate properly, I go little by little, have to push/strain, or depend on certain positions, but I never really empty my bladder normally.

About a year ago (when we finally reached the dysautonomia diagnosis as many of you probably know, it can take forever because so many doctors lack information about these conditions), I had already started developing urinary issues. I’ve had episodes where I simply cannot urinate at all.

A year ago my neurologist told me I needed to get a urodynamic study done, but I was too scared and avoided it. I know that was a mistake, but the problem isn’t just the test itself, even when they try to catheterize me, it can take them hours because everything down there seems to completely close up, and they end up hurting me a lot. That fear made me avoid dealing with it until now, after another retention episode. They’re now scheduling the urodynamic study.

I would really like to hear your experiences. Do any of you also deal with urinary symptoms like this? My doctors have told me that dysautonomia and EDS can cause bladder and urinary tract dysfunction, but I honestly don’t know how far this could progress. Given how severe my health issues already are, I’m aware I could potentially end up needing a urostomy someday.

The worst part is that my intestines are also a huge problem. Thankfully I have a great gastroenterologist helping me with that. I suffer from horrible constipation, truly awful, A NIGHTMARE, and sometimes not even medication helps, but I’m getting off topic...

Could you please share your experiences with urinary problems? How do you live with it? Have you gotten answers about what part of the urinary system is malfunctioning? Have you found anything that helps? And even if you haven’t found solutions, I’d still really appreciate hearing from you. I feel very alone and hopeless right now.

Also, if any of you have had a urodynamic study done, I would be extremely grateful if you could tell me about your experience with it.

Living with this is so difficult. Thank you for reading.

I have dysautonomia, EDS, and endometriosis. Honestly, I struggle with a lot of things in general, but lately this issue has become especially difficult, among others. A few days ago I completely stopped being able to urinate and had to be catheterized. This has happened to me before, years ago. I’ve always struggled to urinate properly, I go little by little, have to push/strain, or depend on certain positions, but I never really empty my bladder normally.

About a year ago (when we finally reached the dysautonomia diagnosis as many of you probably know, it can take forever because so many doctors lack information about these conditions), I had already started developing urinary issues. I’ve had episodes where I simply cannot urinate at all.

A year ago my neurologist told me I needed to get a urodynamic study done, but I was too scared and avoided it. I know that was a mistake, but the problem isn’t just the test itself, even when they try to catheterize me, it can take them hours because everything down there seems to completely close up, and they end up hurting me a lot. That fear made me avoid dealing with it until now, after another retention episode. They’re now scheduling the urodynamic study.

I would really like to hear your experiences. Do any of you also deal with urinary symptoms like this? My doctors have told me that dysautonomia and EDS can cause bladder and urinary tract dysfunction, but I honestly don’t know how far this could progress. Given how severe my health issues already are, I’m aware I could potentially end up needing a urostomy someday.

The worst part is that my intestines are also a huge problem. Thankfully I have a great gastroenterologist helping me with that. I suffer from horrible constipation, truly awful, A NIGHTMARE, and sometimes not even medication helps, but I’m getting off topic...

Could you please share your experiences with urinary problems? How do you live with it? Have you gotten answers about what part of the urinary system is malfunctioning? Have you found anything that helps? And even if you haven’t found solutions, I’d still really appreciate hearing from you. I feel very alone and hopeless right now.

Also, if any of you have had a urodynamic study done, I would be extremely grateful if you could tell me about your experience with it.

Living with this is so difficult. Thank you for reading.