Guest guest Posted February 24, 2004 Report Share Posted February 24, 2004 na, Welcome to the group. I am so sorry that you have had to endure such trials and loss. I am a DES daughter (mom took injections) with a very small t-shaped uterus. I don't know the measurements. The HSG report says it is " markedly narrowed " . It looks normal on the outside, though, from what I have been told. I have PCOS, but haven't taken any meds for it. We did IUI without meds (minimizing risk for multiples) and got pregnant on the first try. However, I am having a first trimester miscarriage. I wish I could give you more encouragement. I definitely don't want to discourage you. It is unfortunate that there are not many hard facts about this. Are you a member of the DES listserv? I would like to suggest posting your e-mail there, too, to see what kind of responses that you get. Do you know if your uterus is normal on the outside and small on the inside? If it is the internal cavitiy that is the issue, there may be surgery to correct it if that is something you might be interested in pursuing. There is surgery for t-shapes, but it is not common and some say that it has not been proven to be successful. My RE also told me that there isn't surgery to correct a t-shape, so it is possible that your doctor is not aware of all the options either. I know this is probably not the response you were hoping for. I do wish that you could find the answers to your questions and wisdom to know what steps to take next. Mikell, 32 t-shaped DES exposed PCOS w/possible endo m/c #1 2/04 ttc for 1 year New Member Intro-na (Sorry so long) Hi all, I just joined and wanted to introduce myself and tell you a little about my uterus issues/history... I'll try to keep it all short and to the point so I don't clog your email/bore you all to tears, but here is the long and the short of it: - I'm going to be 34 in April, happily married for 8 years, ttc for 5 years - I am DES exposed but was always told that all the reproductive parts were normal (except for a tipped cervix - no big deal) until recently. Also, I had no reason to suspect anything was wrong since I have regular periods and have never had any problems in this area... - 5 years ago I got pg on our 2nd try but then miscarried at 17 weeks for no apparent reason. There was just no hb at a normal u/s - no bleeding/ cramping etc. At that point I was with an ob/gyn & had a D & C, no testing was ever done & no mention ever made about any physical irregularities. - March-July 2003: Started seeing an RE who did an hsg, laparoscopy, hysteroscopy, & pronounced everything normal - July 2003 - Went on clomid. This thinned my ut. lining so much that it could not support a pregnancy. Moved on to injectibles. - Aug 2003 - Failed IUI cycle (with injectibles) - Sept/Oct 2003 - Changed RE's, started another IUI cycle which was cancelled because my e2 levels were rising too quickly after all the injections and IUI was not done. BUT, we got pregnant on our own. At 4.5 weeks I started bleeding & was told I was having another m/c. Heavy bleeding continued. Week 5 I went back to confirm dropping beta levels and found they were still rising - I had m/c'ed 1 of 2. Bleeding stopped, a sac was seen on u/c and then at 7 weeks bleeding started again and I m/c'ed #2. - RE did tests for recurrent miscarriage and came back with 3 separate and unrelated problems: 1. Insulin resistance (the opposite of diabetes basically) - treatable with glucophage 2. Leucocyte Antibody Detection - DH and I are nont particularly compatible tissue-wise - this is a 1 in 300 chance random thing - treatable with extra progesterone after +hpt 3. Embryo Toxicity Factor - treatable by extra progesterone after +hpt All looked good since all problems were/are treatable. The plan was to treat the insulin problem, then IUI and use massive doses of progesterone upon another confirmed pregnancy. Then the RE did another hysteroscopy & told me that my uterus was " very small " - as in abnormally small. 1cm as opposed to the normal 3cm. I was told there is no way on earth I'll ever be able to carry more than one child and may or may not be able to carry one, depending on how far my uterus stretches. Since I have never made it past 17 weeks, and they don't know why that baby died - whether it was because my uterus maxed out or one of the other problems - no one can really predice how a pregnancy will go. If I get pg again I'll be at extremely high risk of m/c, premature delivery & stillbirth & will probably be on bedrest a lot of the time. It will be a long grueling, terrifying process basically. And since I need fertility treatments to get pg in the first place there is a greater chance of multiples in general so if I get pg with more than 1 I'll have to either decide to kill on or both will die. So... surrogacy is also an option we are considering but since I've never had a pregnancy where I was treated for the other 3 problems, we just don't know how long my uterus can last in a pregnancy/how far it will stretch, so right now we're leaning towards trying again - at least until I'm told that the reason a pg ended was because of my uterus as opposed to some of the other stuff. At that point there will be no hope left since a small uterus is not fixable. So... that's my story... Does anyone else out there have a very small uterus by any chance? If so, have any of you been able to have children? I'd like to compare notes if possible with anyone else in a similar situation. Thanks, na Share bookmarks: http://groups.yahoo.com/group/MullerianAnomalies/links/ Share files: http://groups.yahoo.com/group/MullerianAnomalies/files/ The Congenital Uterine Anomalies Home Page: http://www.wegrokit.com/uterineanomalies/ es/ The Congenital Uterine Anomalies Home Page: http://www.wegrokit.com/uterineanomalies/ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2004 Report Share Posted February 27, 2004 Hi Mikell, Thanks for your posting... I really have no idea if it's jsut the inside or the outside that is the issue with my uterus (not yet anyway!) but I'm hoping to get more details on that next week, so hopefully I'll know more then. Since it was a hysteroscopy though, I think they were probably talking abotu the internal cavity - though that doesn't rule out the outside of it being too small too... I'm just not sure. That's a great idea about posting on the DES listserv - thanks, I will definitly do that. One thing you mentioned is that your mom did injectible DES - my mom told me that she took it but since she never mentioned how I always assumed that it was in pill form. Was there a pill form? Are there any differences in DES children exposed to pill as opposed to injections? I really don't know nearly as much as I probably should about all this... Thanks, na > na, > Welcome to the group. I am so sorry that you have had to endure such trials and loss. I am a DES daughter (mom took injections) with a very small t-shaped uterus. I don't know the measurements. The HSG report says it is " markedly narrowed " . It looks normal on the outside, though, from what I have been told. I have PCOS, but haven't taken any meds for it. We did IUI without meds (minimizing risk for multiples) and got pregnant on the first try. However, I am having a first trimester miscarriage. I wish I could give you more encouragement. I definitely don't want to discourage you. It is unfortunate that there are not many hard facts about this. Are you a member of the DES listserv? I would like to suggest posting your e-mail there, too, to see what kind of responses that you get. Do you know if your uterus is normal on the outside and small on the inside? If it is the internal cavitiy that is the issue, there may be surgery to correct it if that is something you might be interested in pursuing. There is surgery for t-shapes, but it is not common and some say that it has not been proven to be successful. My RE also told me that there isn't surgery to correct a t-shape, so it is possible that your doctor is not aware of all the options either. I know this is probably not the response you were hoping for. I do wish that you could find the answers to your questions and wisdom to know what steps to take next. > Mikell, 32 > t-shaped > DES exposed > PCOS w/possible endo > m/c #1 2/04 > ttc for 1 year > New Member Intro-na (Sorry so long) > > > Hi all, > I just joined and wanted to introduce myself and tell you a little > about my uterus issues/history... I'll try to keep it all short and > to the point so I don't clog your email/bore you all to tears, but > here is the long and the short of it: > > - I'm going to be 34 in April, happily married for 8 years, ttc for 5 > years > - I am DES exposed but was always told that all the reproductive > parts were normal (except for a tipped cervix - no big deal) until > recently. Also, I had no reason to suspect anything was wrong since > I have regular periods and have never had any problems in this area... > - 5 years ago I got pg on our 2nd try but then miscarried at 17 weeks > for no apparent reason. There was just no hb at a normal u/s - no > bleeding/ cramping etc. At that point I was with an ob/gyn & had a > D & C, no testing was ever done & no mention ever made about any > physical irregularities. > - March-July 2003: Started seeing an RE who did an hsg, laparoscopy, > hysteroscopy, & pronounced everything normal > - July 2003 - Went on clomid. This thinned my ut. lining so much > that it could not support a pregnancy. Moved on to injectibles. > - Aug 2003 - Failed IUI cycle (with injectibles) > - Sept/Oct 2003 - Changed RE's, started another IUI cycle which was > cancelled because my e2 levels were rising too quickly after all the > injections and IUI was not done. BUT, we got pregnant on our own. At > 4.5 weeks I started bleeding & was told I was having another m/c. > Heavy bleeding continued. Week 5 I went back to confirm dropping beta > levels and found they were still rising - I had m/c'ed 1 of 2. > Bleeding stopped, a sac was seen on u/c and then at 7 weeks bleeding > started again and I m/c'ed #2. > - RE did tests for recurrent miscarriage and came back with 3 > separate and unrelated problems: > 1. Insulin resistance (the opposite of diabetes basically) - > treatable with glucophage > 2. Leucocyte Antibody Detection - DH and I are nont particularly > compatible tissue-wise - this is a 1 in 300 chance random thing - > treatable with extra progesterone after +hpt > 3. Embryo Toxicity Factor - treatable by extra progesterone after +hpt > All looked good since all problems were/are treatable. The plan was > to treat the insulin problem, then IUI and use massive doses of > progesterone upon another confirmed pregnancy. > Then the RE did another hysteroscopy & told me that my uterus > was " very small " - as in abnormally small. 1cm as opposed to the > normal 3cm. I was told there is no way on earth I'll ever be able to > carry more than one child and may or may not be able to carry one, > depending on how far my uterus stretches. Since I have never made it > past 17 weeks, and they don't know why that baby died - whether it > was because my uterus maxed out or one of the other problems - no one > can really predice how a pregnancy will go. If I get pg again I'll > be at extremely high risk of m/c, premature delivery & stillbirth & > will probably be on bedrest a lot of the time. It will be a long > grueling, terrifying process basically. And since I need fertility > treatments to get pg in the first place there is a greater chance of > multiples in general so if I get pg with more than 1 I'll have to > either decide to kill on or both will die. So... surrogacy is also an > option we are considering but since I've never had a pregnancy where > I was treated for the other 3 problems, we just don't know how long > my uterus can last in a pregnancy/how far it will stretch, so right > now we're leaning towards trying again - at least until I'm told that > the reason a pg ended was because of my uterus as opposed to some of > the other stuff. At that point there will be no hope left since a > small uterus is not fixable. > > So... that's my story... Does anyone else out there have a very small > uterus by any chance? If so, have any of you been able to have > children? I'd like to compare notes if possible with anyone else in a > similar situation. > Thanks, > na > > > > > Share bookmarks: http://groups.yahoo.com/group/MullerianAnomalies/links/ > > Share files: > http://groups.yahoo.com/group/MullerianAnomalies/files/ > > The Congenital Uterine Anomalies Home Page: > http://www.wegrokit.com/uterineanomalies/ > > > > es/ > > The Congenital Uterine Anomalies Home Page: > http://www.wegrokit.com/uterineanomalies/ > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2004 Report Share Posted March 7, 2004 Mikell, Thanks for sending that link - I applied to join the DES daughters group and hopefully will be accepted soon. I'm going to ask my mom to find her old medical records to find out how much she took and for how long during ther pregnancy so at least I'll have more info... Thanks so much for all your help & good luck with your new job. na Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2004 Report Share Posted March 7, 2004 Mikell, Thanks for sending that link - I applied to join the DES daughters group and hopefully will be accepted soon. I'm going to ask my mom to find her old medical records to find out how much she took and for how long during ther pregnancy so at least I'll have more info... Thanks so much for all your help & good luck with your new job. na Quote Link to comment Share on other sites More sharing options...
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