Hi, this is my first post and I want to say I think this site is extremely helpful. I haven't found a situation like mine, so here goes. I am 51 years old and have a history of ovarian cysts. I also am a hemophilia carrier, with a factor IX count of 23%. My periods have always been heavy. I hemorraged when my child was born. Anyway, last year around June I started perimenopause. I thought, YEAH! Finally, at last! Did I mention my periods were heavy? So, to say the least, I was excited about this part of my life beginning to end. Then, I had a very smal period in September. I went for 6 months without a period, and had the usual perimenopausal symptoms, hot flashes, mood swings, etc. Then, in about Feb-Mar, I noticed my symptoms were disappearing. In March I had a huge period, followed by another one in April. I had to call my hemotologist and I gave myself factor for the bleeding. I go to my regular OB/GYN, have the usual procedures, and lo and behold I have a 8cm cyst on my right ovary, and a 3 cm one on my left ovary. The u/s also indicated some fibrous growth on my uterine wall. Now I've had the CT scan, and my CA125 test is normal. I'm scheduled to see a oncol/gyn next week. My symptoms include back ache, nausea, pain shooting down my left side and leg, bloating, and I have gained like 15 pounds in the past year. (I thought the weight gain was due to the perimenopausal thing). So, what happens now? I was told not to worry. Should I? With my bleeding problem, no Dr wants to touch me. And I mean that literally! Any and all answers will be welcomed and appreciated!
Waiting is the hardest part and not knowing is just as hard. Most Ovarian cysts are benign ( 85%). Definitive diagnosis for Ovarian Cancer can only be done by biopsy. I would try not to worry but I have been there done that and I know it is not so easy. I am sorry you are going thru this. You are your best advocate. You are on the right track seeing an onc/gyn. Hang in there and let us know how you are doing. Kerry
There is now a way for the hemophilic patient to have surgery, you will need to find the doctor that knows of the recent progress in this field. this action was done on a knee replacement and bleeding was controlled.
Summary. In haemophilia patients with inhibitor, elective orthopaedic surgery is usually performed under recombinant activated factor VII (rFVIIa). We report here the case of a severe haemophilia A patient with a high inhibitor who needed a bilateral total knee arthroplasty. Recombinant FVIIa was previously shown to be ineffective for the treatment of muscle and joint bleedings, and he had a history of excessive postoperative bleeding under activated prothrombin complex concentrate (APCC). Thrombin generation test (TGT) was used to assess the efficacy of Factor Eight Inhibitor Bypassing Activity (FEIBA). Insufficient correction of thrombin-generating capacity was observed after administration of 75 U kg(-1) FEIBA. In a multidisciplinary environment, a bilateral total knee arthroplasty was performed using a protocol combining immunoadsorption of inhibitors preoperatively associated with FVIII replacement during a first phase followed by FEIBA when the inhibitor reappeared. To our knowledge this is the first direct application of TGT in the management of haemophilia patients with inhibitor, which indicated that a sequential use of immunoadsorption, FVIII and FEIBA was the most appropriate treatment to perform this major elective surgery. This case demonstrates that this combined protocol can be safely used to cover major surgery in inhibitor patients. In addition, it also suggests that TGT may have a major contribution in the decision-making process of the most adapted therapy for the treatment of such high-risk patients.
I didn't know I had the bleeding problem until I gave birth. I kinda knew but it was never that bad. Anyway, I have since had an endomentrial ablation,my tubes tied, a liver and a breast biopsy. I am given Factor IX for all procedures now and did not have any problems. It's just that with my history of hemorraging I'm a little scared. I know I shouldn't be, that the hemotologist staff will take excellent care of me. They'll probably keep me overnight just to make sure I'm OK. That's generally what they do. Thanks for the input.
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