Guest guest Posted December 15, 2001 Report Share Posted December 15, 2001 Welby, , " Bulge Ripping seams " I'm in the middle of being an experiment. I'm 31, no kids and last May was diagnosed with a single large fibroid (8 " x8 " x5 " - yes folks, that is correct - inches). The doctors told me my only option was a hysterectomy because of the size. With a myomectomy, even the best surgeon I could find said I wouldn't have enough uterus left to stitch back together (I live in Chicago - I talked to a lot of doctors). He said if it were half its size, I would have had a chance. So I talked to an embolization person - several in fact - and we all came up with a plan. I would have an embolization, wait six months and see how well the fibroid had shrunk, and if we could get a 50% volume reduction (46% is average on a normal size fibroid, large ones have smaller overall strinkage), the myomectomy doctor would try and salvage my uterus. The embolization occurred on July 24, went smoothly aside from nausea and cramping for a few days - and the first 2 1/2 months were really exciting because I could feel the reduction in size tremendously. The last few months have been excruciating, I haven't been able to see/feel any further reduction. End of January, we'll do the MRI and figure out what's next. The risks for this are pretty heavy...we wouldn't be going into it if we weren't extremely well researched. Embolization of fibroids is risky, no matter how reassuring the " statistics " on the procedure are. Every doctor I talked to except the embolization guy had personal experience with one or more going wrong - the fibroid getting infected and then an emergency hysterectomy. Their experience was with people who didn't stay in contact with the embolization doctors, and then didn't respond to fever and signs of infection. All preventable they said with consistent monitoring and knowing what to look for, and not ignoring the symptoms. Ok, we could deal with that. However, my CA125 - the cancer blood test, came back slightly elevated originally, and so we have checked that every couple of months. It went back down after the embolization, but it's one more concern. Oh yeah, and the myomectomy doctor wants to try Lupron if the embolization doesn't kill the whole thing off. I'm not taking Lupron - those are not good statistics, fine for fertility, bad for six months straight. So, my advice? RESEARCH, doctors don't see past their own specialities, find a unique solution, weigh the risks and then put together your team. Seriously. I have three main doctors involved (4 including my family practice). My gynecologist, Dr. c at Rush Copley, who is my " I want to see you have a baby " and " I think embolization is stupid " doctor - he's my cynic and helps me think things through thoroughly. Dr. Binor at Rush Copley, who is " oh, you need a really good myomectomy sturgeon, see Dr. Binor, " but he isn't positive I really need the uterus, because he's a fertility specialist and " you know there is surrogacy, " and then there's Dr. at LaGrange Hospital, the embolization person - best statistics on ovarian survival after embolization (embolization can cause ovarian failure). Oh, and then the rest - Dr. Yourdan, " don't get an embolization " he's the cancer doctor and has seen several bad embolizations, and Dr. Rao the hematologist, " you don't feel faint with a hemoglobin of 7.2? " Listen to everybody, weigh the risks, make your own decision, and make sure you don't become a statistic! Char Wyncoop Cwyncoop@... Digest Number 832 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2001 Report Share Posted December 15, 2001 Welby, , " Bulge Ripping seams " I'm in the middle of being an experiment. I'm 31, no kids and last May was diagnosed with a single large fibroid (8 " x8 " x5 " - yes folks, that is correct - inches). The doctors told me my only option was a hysterectomy because of the size. With a myomectomy, even the best surgeon I could find said I wouldn't have enough uterus left to stitch back together (I live in Chicago - I talked to a lot of doctors). He said if it were half its size, I would have had a chance. So I talked to an embolization person - several in fact - and we all came up with a plan. I would have an embolization, wait six months and see how well the fibroid had shrunk, and if we could get a 50% volume reduction (46% is average on a normal size fibroid, large ones have smaller overall strinkage), the myomectomy doctor would try and salvage my uterus. The embolization occurred on July 24, went smoothly aside from nausea and cramping for a few days - and the first 2 1/2 months were really exciting because I could feel the reduction in size tremendously. The last few months have been excruciating, I haven't been able to see/feel any further reduction. End of January, we'll do the MRI and figure out what's next. The risks for this are pretty heavy...we wouldn't be going into it if we weren't extremely well researched. Embolization of fibroids is risky, no matter how reassuring the " statistics " on the procedure are. Every doctor I talked to except the embolization guy had personal experience with one or more going wrong - the fibroid getting infected and then an emergency hysterectomy. Their experience was with people who didn't stay in contact with the embolization doctors, and then didn't respond to fever and signs of infection. All preventable they said with consistent monitoring and knowing what to look for, and not ignoring the symptoms. Ok, we could deal with that. However, my CA125 - the cancer blood test, came back slightly elevated originally, and so we have checked that every couple of months. It went back down after the embolization, but it's one more concern. Oh yeah, and the myomectomy doctor wants to try Lupron if the embolization doesn't kill the whole thing off. I'm not taking Lupron - those are not good statistics, fine for fertility, bad for six months straight. So, my advice? RESEARCH, doctors don't see past their own specialities, find a unique solution, weigh the risks and then put together your team. Seriously. I have three main doctors involved (4 including my family practice). My gynecologist, Dr. c at Rush Copley, who is my " I want to see you have a baby " and " I think embolization is stupid " doctor - he's my cynic and helps me think things through thoroughly. Dr. Binor at Rush Copley, who is " oh, you need a really good myomectomy sturgeon, see Dr. Binor, " but he isn't positive I really need the uterus, because he's a fertility specialist and " you know there is surrogacy, " and then there's Dr. at LaGrange Hospital, the embolization person - best statistics on ovarian survival after embolization (embolization can cause ovarian failure). Oh, and then the rest - Dr. Yourdan, " don't get an embolization " he's the cancer doctor and has seen several bad embolizations, and Dr. Rao the hematologist, " you don't feel faint with a hemoglobin of 7.2? " Listen to everybody, weigh the risks, make your own decision, and make sure you don't become a statistic! Char Wyncoop Cwyncoop@... Digest Number 832 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2001 Report Share Posted December 15, 2001 Thanks Char for your words from experience. I will be eager to find out where my fibroids are attached. I think I have several and I know one is at least the size of a grapefruit. I had not learned the risks of embolizations yet so I am glad you brought it up. I will do more reading on that. I have read a lot about diet and I think that will be worth pursuing. I love meat and I know I don't eat enough fiber. After eating that way for years, it would be a wonder if I did not have fibroids. Do you know how many grams of fiber we are to have a day? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2001 Report Share Posted December 15, 2001 Thanks Char for your words from experience. I will be eager to find out where my fibroids are attached. I think I have several and I know one is at least the size of a grapefruit. I had not learned the risks of embolizations yet so I am glad you brought it up. I will do more reading on that. I have read a lot about diet and I think that will be worth pursuing. I love meat and I know I don't eat enough fiber. After eating that way for years, it would be a wonder if I did not have fibroids. Do you know how many grams of fiber we are to have a day? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2001 Report Share Posted December 15, 2001 Thanks Char for your words from experience. I will be eager to find out where my fibroids are attached. I think I have several and I know one is at least the size of a grapefruit. I had not learned the risks of embolizations yet so I am glad you brought it up. I will do more reading on that. I have read a lot about diet and I think that will be worth pursuing. I love meat and I know I don't eat enough fiber. After eating that way for years, it would be a wonder if I did not have fibroids. Do you know how many grams of fiber we are to have a day? Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2001 Report Share Posted December 15, 2001 I would continue getting more opinions. My doctor told me that he had a patient that had a fibroid so complex, that he had to almost piece mill her uterus back together. The uterus heals extremely fast. Digest Number 832 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2001 Report Share Posted December 15, 2001 I would continue getting more opinions. My doctor told me that he had a patient that had a fibroid so complex, that he had to almost piece mill her uterus back together. The uterus heals extremely fast. Digest Number 832 > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted December 15, 2001 Report Share Posted December 15, 2001 I would continue getting more opinions. My doctor told me that he had a patient that had a fibroid so complex, that he had to almost piece mill her uterus back together. The uterus heals extremely fast. Digest Number 832 > > Quote Link to comment Share on other sites More sharing options...
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