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Many symptoms-is it endo?From: Lisa (anonymous@obgyn.net)Fri Jan 30 22:21:35 2004
I'm new and don't usually like talking about myself, but I think need someone to tell me I'm not crazy. After seven years of on again, off again pelvic pain, the pain has reached a point where it has it's own monthly cycle. I'm scheduled for a laparascopy at the end of February. For years I've heard the pain is "all in my head" or have been told I have a bladder infection, ovarian cysts, or just normal pain of being a woman. I've been bounced from doctor to doctor (gyn, urogyn, urologist, family doctor,etc.)who only want to handle what is in their "specialty" and never look at the whole picture. I'm hoping the doctor I have now will pinpoint the problem. He suspects endo but there are so many symptoms I have that seem to be related to the disease, but also a lot that don't. I've been through cystoscopies, extensive blood work, ultrasound, Cat scans, IVP, etc. My first symptom was pelvic pain in 1997. A urine test showed blood in my urine. I was told I had chronic urethritis, was put on an antibiotic although my urine always comes back free of bacteria. The last cystoscopy in 2003, done again for pain,hematuria and difficulty in urinating showed two little blue dots on the inside bladder wall.My urologist said they were nothing to be concerned about,told me to follow up with my gyn. In the past 6 months my pelvic pain has become more severe, to the point where I live on vicodin for a week or so. The pain seems to come during mid-cycle with spotty bleeding following (this happened even while on birth control pills). My abdomen has become quite distended (i'm small in size-some people think I'm pregnant because of my belly) & the pain seems to have spread everywhere, into my lower back, rectum area, vulva area and bladder.Then it feels like my body functions shut down where I can't even have a bowel movement or urinate although the feeling of fullness is there. Even sitting at a desk or table becomes uncomfortable. The pain is hard to describe, sometimes like pressure or a pulling sensation. Sometimes it feels like the final stages of labor, when you need to push and you swear any minute you'll see a head or foot pop out. These symptoms are more severe mid-cycle than during my period and I only have one good week during the whole cycle, which is usually right after my menses is over, but before the midway point. The symptom that is throwing me off is the hematuria. My husband thinks I'm faking to try to get out of relations, but even that has become so painful that it leaves me in tears. All tests and pelvic exams have been normal, with the exception of a few ovarian cysts (which were supposed to be controlled by the bc pills) and occasional abdominal tenderness. However, the last cyst I had (or still have) was found in April and I was told it was a 2 cm septate cyst, something I never heard of. other cysts were just simple cysts no larger than 4 cm. I'm 38 yrs old and have two children (now pre-teens), no problems getting pregnant, but both were born premature. I was on bc pills for the past 10 years, with breakthrough bleeding becoming a problem within the past year (did not change my pill).Has anyone else had symptoms that may not be the norm of endo or are my symptoms possibly all endo-related? I'm just tired of crying over it and need to know, am I crazy? And if it isn't endo, what else could it be? The pain is too real to make up, just wish someone would believe me....
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