Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 Several times I have posted that Dr Alice thinks I am positive for mito just not diagnosed...this group is full of people more aware of their bodies and medical changes than most doctors and I would like some guidance and feedback. I am 49 and diagnosed with Lupus maybe, been on prednisone since 1997 and having gynecology issues since 1998. For severe bleeding used IM Depo-Provera MONTHLY for six months and when it stopped working I was scheduled for an emergency hysterectomy(Nov '99). I could not be intubated and woke up five hours and three units of blood later with only a D&C. In 2000 we again started the monthly Provera and when it quit again, I got IM Depot Lupron for a year stopping that in July of 2001. November of 2003 and two years with no cycles my lab work showed the ovaries to be shut down. February those ovaries woke up and I have been bleeding since March 24th. This is showing all the signs of like before when I collected a pint fruit jar of clots more closely resembling calf's liver, in a weekend. I hate to gross everyone out but I am sure many have experienced this as well. Does anyone have experience with bleeding and options to control it? Thanks, Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 Debra I had a similar experience. What they found was that the lining was full of nooks and crannies which made it impossible for the lining to shed completely. I had a total hysterectomy. I have problems with intubation. It is thought that it might have been due to the type of anestheia used. This was during a surgery after the hysterectomy. I am now intubated while awake or given a spinal anestheia. My long, extensive shoulder surgery 1/5 years ago was done with an awake intubation. It was similar to having an EDG. laurie > > Reply-To: > Date: Sat, 17 Apr 2004 16:39:32 -0600 > To: > > Subject: gyn problems and questions > > Several times I have posted that Dr Alice thinks I am positive for mito just > not diagnosed...this group is full of people more aware of their bodies and > medical changes than most doctors and I would like some guidance and feedback. > > I am 49 and diagnosed with Lupus maybe, been on prednisone since 1997 and > having gynecology issues since 1998. For severe bleeding used IM Depo-Provera > MONTHLY for six months and when it stopped working I was scheduled for an > emergency hysterectomy(Nov '99). I could not be intubated and woke up five > hours and three units of blood later with only a D&C. In 2000 we again started > the monthly Provera and when it quit again, I got IM Depot Lupron for a year > stopping that in July of 2001. November of 2003 and two years with no cycles > my lab work showed the ovaries to be shut > down. February those ovaries woke up and I have been bleeding since March > 24th. This is showing all the signs of like before when I collected a pint > fruit jar of clots more closely resembling calf's liver, in a weekend. I hate > to gross everyone out but I am sure many have experienced this as well. > > Does anyone have experience with bleeding and options to control it? > > Thanks, > Debra > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 Debra, I had problems with clotting. Mine sounds a lot like yours. At first they thought of a tubal ligation, than a thermal ablation, then the doctors finally decided that I needed a hysterectomy .All these thoughts and final decision were made within 8 weeks, so the doctors were really thinking. The clotting had been going on since I was 19 and my periods were very irregular, so in July of 2002, at age 25, I had my hysterectomy. It doesn't sound as if a hysterectomy is going to work in your case, as it didn't in the past. I think thermal ablations, the burning off of the uterus lining can be done under local anesthetic, so you wouldn't be put totally under. I don't know if that would help or not. I'm sorry I can't help you more. Smiles and hugs, a On Sat, 17 Apr 2004 16:39:32 -0600 " Debra Beckmann " beckmann@...> writes: Several times I have posted that Dr Alice thinks I am positive for mito just not diagnosed...this group is full of people more aware of their bodies and medical changes than most doctors and I would like some guidance and feedback. I am 49 and diagnosed with Lupus maybe, been on prednisone since 1997 and having gynecology issues since 1998. For severe bleeding used IM Depo-Provera MONTHLY for six months and when it stopped working I was scheduled for an emergency hysterectomy(Nov '99). I could not be intubated and woke up five hours and three units of blood later with only a D&C. In 2000 we again started the monthly Provera and when it quit again, I got IM Depot Lupron for a year stopping that in July of 2001. November of 2003 and two years with no cycles my lab work showed the ovaries to be shut down. February those ovaries woke up and I have been bleeding since March 24th. This is showing all the signs of like before when I collected a pint fruit jar of clots more closely resembling calf's liver, in a weekend. I hate to gross everyone out but I am sure many have experienced this as well. Does anyone have experience with bleeding and options to control it? Thanks, Debra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 17, 2004 Report Share Posted April 17, 2004 Debra, Sorry to hear about the gyn problems you have been having. It certainly sounds frustrating. I am 23 and I have mito and a carnitine deficiency. I have been bleeding non-stop for over a year. I can't really share any solutions with you, as my doctors haven't yet found one. I have been using the Ortho Evra patch for 7 months, and once I went on that in combination with Mircette BC pills, the bleeding slowed down. It didn't stop though. If it is the lining of my uterus that is causing the problem, they are thinking about Endometrial Thermal Ablation. If it isn't that and something else, I may have to consider a hysterectomy. I just wanted to share this link with you. It is a message board for people thinking about or are having a thermal ablation. If your doctor does mention thermal ablation as a possibility, you could go here and probably get a lot of your questions about thermal ablation answered The link is http://home.att.net/~endometrial_ablation/index.html . Good luck with everything and I hope that your doctors can find some answers for you. Keep Smiling, Nikki > Several times I have posted that Dr Alice thinks I am positive for mito just not diagnosed...this group is full of people more aware of their bodies and medical changes than most doctors and I would like some guidance and feedback. > > I am 49 and diagnosed with Lupus maybe, been on prednisone since 1997 and having gynecology issues since 1998. For severe bleeding used IM Depo-Provera MONTHLY for six months and when it stopped working I was scheduled for an emergency hysterectomy(Nov '99). I could not be intubated and woke up five hours and three units of blood later with only a D&C. In 2000 we again started the monthly Provera and when it quit again, I got IM Depot Lupron for a year stopping that in July of 2001. November of 2003 and two years with no cycles my lab work showed the ovaries to be shut > down. February those ovaries woke up and I have been bleeding since March 24th. This is showing all the signs of like before when I collected a pint fruit jar of clots more closely resembling calf's liver, in a weekend. I hate to gross everyone out but I am sure many have experienced this as well. > > Does anyone have experience with bleeding and options to control it? > > Thanks, > Debra > > Quote Link to comment Share on other sites More sharing options...
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