Aug 30, 2011 - 11:47 pm
Good evening everyone. I visit this site often. I have been mostly lurking since 9/27/10 when I was first diagnosed. I had the standard nigro protocol treatment 11/1-12/8/10. I had severe burns and had a nurse come to dress the wounds everday until Jan. It was a long hard road and I have sympathy for each and everyone of you. I have the typical pelvic and groin pain coupled with nerve damage in my right thigh which has rendered my front thigh numb but yet excruciatingly painful when touched. Back of thigh fine. The two items of main concern to me are, losing my balance and vaginal sores.
I have had pet and ct of my head, all kinds of blood tests, all negative. White blood cells normal but neuts high and leuks low. Rb low. I lose my balance several times a day. Sometimes several times in an hour if I am tired. Doctors do not seem to be alarmed. I look like I have been drinking way too much! Has anybody had this after treatment? Any input no matter how insignificant it may seem, may help me. I am desperate for an answer.
The sores, ouch. My vagina shed and shed and shed and then it shed some more. There were several sores and then it healed, maybe in feb. Suddenly sores have come back, three of them. No more shedding. It hurts when I pee. I have started using the premarin cream again, hopefully that will help. Saw the gyno, she just threw her hands up in the air and said she was sorry and that it was due to treatment. Anybody else have a reoccurrence of the sores. Will this ever go away? I can't use dilator as she does not want anything in there until the sores heal.
I was dxed at 49. I am very active physically.