Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 Hi, I'm new to this group, mainly here to lurk and hopefully learn something about EDS. I was recently tested for bleeding disorders, and the results came back negative. When my hematologist saw I was double-jointed, she suggested I see a dermatologist to look into EDS. We're trying to account for a haematoma (~2.5 units of blood lost internally), plus some hemorrhaging, that I had after the birth of my child. We're doing this because I will probably need surgery to remove a large uterine fibroid, and we want to know how much of a risk blood loss will be. My dermatology appointment is still some time off, so I won't know for a while what type of EDS I might have. In the meantime, I'm wondering if anyone can comment on how EDS might affect surgical options, and how EDS-related bleeding problems might be handled during surgery. My understanding is that my choices will be between a myomectomy (removing just the fibroid, which typically involves a lot of blood loss) and a hysterectomy (less blood loss, but a radical way to treat a benign, if obnoxious, tumor). Anyone been through this too? Thanks, --Liz Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 Hi Liz, Welcome! My family has type 3. We have little problems with bleeding though. I don't feel qualified to answer you question, but I'm sure there are several that can. Glad you found us! Cindy C, AKA, Cindylouwho. new here and question Hi, I'm new to this group, mainly here to lurk and hopefully learn something about EDS. I was recently tested for bleeding disorders, and the results came back negative. When my hematologist saw I was double-jointed, she suggested I see a dermatologist to look into EDS. We're trying to account for a haematoma (~2.5 units of blood lost internally), plus some hemorrhaging, that I had after the birth of my child. We're doing this because I will probably need surgery to remove a large uterine fibroid, and we want to know how much of a risk blood loss will be. My dermatology appointment is still some time off, so I won't know for a while what type of EDS I might have. In the meantime, I'm wondering if anyone can comment on how EDS might affect surgical options, and how EDS-related bleeding problems might be handled during surgery. My understanding is that my choices will be between a myomectomy (removing just the fibroid, which typically involves a lot of blood loss) and a hysterectomy (less blood loss, but a radical way to treat a benign, if obnoxious, tumor). Anyone been through this too? Thanks, --Liz To learn more about EDS, visit our website: http://members.rogers.com/ceda2/ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 Hi Liz, Welcome! My family has type 3. We have little problems with bleeding though. I don't feel qualified to answer you question, but I'm sure there are several that can. Glad you found us! Cindy C, AKA, Cindylouwho. new here and question Hi, I'm new to this group, mainly here to lurk and hopefully learn something about EDS. I was recently tested for bleeding disorders, and the results came back negative. When my hematologist saw I was double-jointed, she suggested I see a dermatologist to look into EDS. We're trying to account for a haematoma (~2.5 units of blood lost internally), plus some hemorrhaging, that I had after the birth of my child. We're doing this because I will probably need surgery to remove a large uterine fibroid, and we want to know how much of a risk blood loss will be. My dermatology appointment is still some time off, so I won't know for a while what type of EDS I might have. In the meantime, I'm wondering if anyone can comment on how EDS might affect surgical options, and how EDS-related bleeding problems might be handled during surgery. My understanding is that my choices will be between a myomectomy (removing just the fibroid, which typically involves a lot of blood loss) and a hysterectomy (less blood loss, but a radical way to treat a benign, if obnoxious, tumor). Anyone been through this too? Thanks, --Liz To learn more about EDS, visit our website: http://members.rogers.com/ceda2/ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 Hi Liz, Welcome! My family has type 3. We have little problems with bleeding though. I don't feel qualified to answer you question, but I'm sure there are several that can. Glad you found us! Cindy C, AKA, Cindylouwho. new here and question Hi, I'm new to this group, mainly here to lurk and hopefully learn something about EDS. I was recently tested for bleeding disorders, and the results came back negative. When my hematologist saw I was double-jointed, she suggested I see a dermatologist to look into EDS. We're trying to account for a haematoma (~2.5 units of blood lost internally), plus some hemorrhaging, that I had after the birth of my child. We're doing this because I will probably need surgery to remove a large uterine fibroid, and we want to know how much of a risk blood loss will be. My dermatology appointment is still some time off, so I won't know for a while what type of EDS I might have. In the meantime, I'm wondering if anyone can comment on how EDS might affect surgical options, and how EDS-related bleeding problems might be handled during surgery. My understanding is that my choices will be between a myomectomy (removing just the fibroid, which typically involves a lot of blood loss) and a hysterectomy (less blood loss, but a radical way to treat a benign, if obnoxious, tumor). Anyone been through this too? Thanks, --Liz To learn more about EDS, visit our website: http://members.rogers.com/ceda2/ ------------------------------------------------------------------------------ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 I to am a H-EDS (type III) with some periodonntal cross over in the family but no bleeding troubles, sorry I can't be of much help. You may want to make sure you have the biopsy done to confirm or deny if you have VEDS as this is the only test available so far to confirm or deny a type of EDS and if you do have bleeding issues it is probably well worth ruling VEDS in or out. Sharon > Hi Liz, Welcome! My family has type 3. We have little problems with bleeding though. I don't feel qualified to answer you question, but I'm sure there are several that can. Glad you found us! Cindy C, AKA, Cindylouwho. > new here and question > > > Hi, > > I'm new to this group, mainly here to lurk and hopefully learn > something about EDS. I was recently tested for bleeding disorders, > and the results came back negative. When my hematologist saw I was > double-jointed, she suggested I see a dermatologist to look into EDS. > We're trying to account for a haematoma (~2.5 units of blood lost > internally), plus some hemorrhaging, that I had after the birth of my > child. We're doing this because I will probably need surgery to > remove a large uterine fibroid, and we want to know how much of a > risk blood loss will be. > > My dermatology appointment is still some time off, so I won't know > for a while what type of EDS I might have. In the meantime, I'm > wondering if anyone can comment on how EDS might affect surgical > options, and how EDS-related bleeding problems might be handled > during surgery. My understanding is that my choices will be between a > myomectomy (removing just the fibroid, which typically involves a lot > of blood loss) and a hysterectomy (less blood loss, but a radical way > to treat a benign, if obnoxious, tumor). Anyone been through this too? > > Thanks, > --Liz > > > > To learn more about EDS, visit our website: http://members.rogers.com/ceda2/ > > > > -------------------------------------------------------------------- ---------- > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 24, 2004 Report Share Posted March 24, 2004 Hi, We're doing this because I will probably need surgery to remove a large uterine fibroid, and we want to know how much of a risk blood loss will be. Liz, whenever I had abdominal surgery, I usually did lost more blood than usual. I don't know why that is, I wish I could help you. My dermatology appointment is still some time off, so I won't know for a while what type of EDS I might have. In the meantime, I'm wondering if anyone can comment on how EDS might affect surgical options, and how EDS-related bleeding problems might be handled during surgery. My understanding is that my choices will be between a myomectomy (removing just the fibroid, which typically involves a lot of blood loss) and a hysterectomy (less blood loss, but a radical way to treat a benign, if obnoxious, tumor). Anyone been through this too? I had a hysterectomy years ago. I had it because I was bleeding most of each month. The doctor did it vaginally, but it sounds like yours may be done by abdominal incision. If you have a large fibroid, or many of them, which is what it was in my case, I would advise abdominal. My doctor didn't know there would be so many fibroids, and it took 4-5 hours instead of the 1-1.5 hours he calculated. I had a horrible back ache for weeks because of being in stirrups for that long. I wish I could be of more help to you. Perhaps Jill has an article she can send to you. I wish you much luck, Liz, and I'm happy to have you as part of our wonderful family! I think you'll love it here! Love Lana Quote Link to comment Share on other sites More sharing options...
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