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I need help - I don't trust the doctors to help me & I feel like I'm 90From: Kathy (anonymous@obgyn.net)Thu Jul 31 09:58:55 2008
Okay, I will try to keep this as short as possible, but there's a lot of things wrong with me (or so I suspect). I don't really trust the doctors anymore and you all are so well educated in these areas, I'm really hoping you'll be able to help me. I'll give you a (hopefully) brief history. Had pelvic pain and nausea since I was about 15 or 16. I saw my PCP for it until I was 22, who just kept telling me that it was IBS or that I wasn't eating right. I started BC when I was 17. Nobody believed there was anything legitimately wrong with me because the doctor said there wasn't, but you know your own body. I lost a couple of jobs from missing time but because there was no "medical reason", there was nothing I could do. My PCP also used to do my paps and exams and all that so finally at 22, he referred me to an actual OB. I started seeing my OB who immediately suspected endo. He did a laparoscopy and removed some. Unfortunately I didn't know enough through any of my surgeries to ask specific questions as to where it was, and the information was never imparted to me. I do know that he said I had a golfball sized adhesion behind one of my ovaries, and endo on my bowels as well as some place in my reproductive areas (again, he wasn't specific). Since my first lap 9/02, I had another one 4/04, 7/06 and 7/07, if memory serves correct. Each time endo was found and removed. I also do not know what method was used to remove the endo - I didn't know enough to ask. Now my OB has been out of the office for months and may be retiring. I'm getting a copy of all my records to send to the CEC. However, I doubt I will be able to go and have anything done as I have horrible insurance coverage and I'm on an Intermittent FMLA from work. If I don't go in, I don't get paid and I can't afford to miss all the time I would have to take off to fly to GA. I'm hoping someone here will be able to help me with a few things. I have been having some really weird things going on with me and I don't know if they're endo related or not. I am going to go to my PCP for some tests, as I have suspected things from CFS, Fibromyalgia, Candida, etc. If anyone can tell me if they've had these things happen and what worked or what I should ask my doctor to test me for, I would appreciate it. Here's what I'm experiencing: First and foremost, I am 28 years old and I feel like I'm 98. My entire body is achy and my joints feel stiff. I have no energy regardless of how much sleep I try to get. Because of this, I have not seen most of my friends in over a year. I have no problem falling asleep but staying asleep is another story. I cannot remember the last time I slept thru an entire night. I cannot regulate my body temp...I'm constantly ping-ponging back and forth between freezing and sweating. I'm dizzy all the time. Headaches a lot (I never used to get them). Pain and nausea (of course). One of the weirder things is my thighs, hips and butt have been aching to the point where it almost feels like a pinched nerve radiating down my legs. My hip pain almost feels like my hips are going to break when I walk. My hair has become dry and brittle and has been falling out.I'm very irritable and emotional. I've already met with a gastroenterologist who has done a colonoscopy and an endoscopy (EGD) and nothing was found with my stomach or anything. It seems like each doctor either wants to chalk everything up to endo or wants to refer me to someone else. I feel so overlooked and I feel like I'm viewed as a whiner and a complainer but if they just knew how bad this was, they wouldn't say that. I'm on the Nuva Ring - my OB put me on it to "help with pain around that time of the month". But what he doesn't seem to get is that it hurts ALL the time, not just at that time of month. Plus the only options I ever got from him for treating endo were the standard "get pregnant, get a hysterectomy, get a laparoscopy or go on Lupron". I will not go on Lupron as I've had severe depression in the past and I fear what the mood swings will do to me. I am not getting pregnant - my boyfriend is only 24 and there is no way we are ready for that. I don't want to keep getting laps, but there is no way I am going to get a hysterectomy at 28, even though some days I would be more inclined to just tell them to rip everything out if it'll just stop the pain. Can anyone offer me any type of advice, please?
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