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Long post, linking which symptoms go with endo...From: anonymous (anonymous@obgyn.net)Fri May 18 14:43:24 2001
Hi, new to this board. This is a very long history and current medical status. I was stunned to get on this board (simply looking for info/results on Lupron) and see how many other symptoms are common to endometriosis sufferers. It made me wonder about several symptoms and problems I’m having. I will catalogue my significant medical events here and would love to know if any of you have/had some or all of them. Before I start, I would like to say how awed I am by many of the stories. Many womens’ pain and bleeding postings sound so severe and scary. My heartfelt wishes go out to you. I have always had painful intercourse and lots of bladder/urinary tract pain. In my mid 20’s I was diagnosed with yeast infections, interstitial cystitus (sp?) and later was told about scarring around the opening of my urethra connected to scarring in my vagina. I had outpatient surgery to “clip” the urethral scars. I was on constant antibiotics and pyridium. I didn’t get much bladder pain relief until I changed my lifestyle – lower stress, started my own business and refused to work with abusive people, etc. Tried through the years to ignore the pelvic pain, but about 5 years ago I tried again with another obgyn. She diagnosed me with severe vulvar scarring, undeveloped labia and a dermatosis called lichen schlerosis et atrophicus. She gave me a topical steroid but I didn’t get much relief (and was left with the trauma of the outpatient biopsy – never, never, never let someone do that to you!) She also found vaginal scarring but I moved cities before we got any further. Leap ahead two more years, I move to Orlando, Fl and start again with a new obgyn. She says my pain may be from several things and finds an ovarian cyst through vaginal ultrasound. During the laparoscopy, she finds the cyst is actually on my right fallopian tube – removes the cyst (benign) – but was able to leave the ovary (yeah). Also, she finds I have “moderate to severe endo.” She cauterizes the red, yellow and black ones. She also clips some “connective adhesions” that are on the inside wall of my left hip adhering a part of my colon/intestine to my hip. At post op, she gives me a script for a Lupron injection. Before I take this Lupron (my sister’s therapist told her that a patient she had who underwent Lupron had SERIOUS side effects and was therefore strongly discouraging the treatment), I decide to do a little internet research on Lupron and endo. Surprise, surprise, surprise! I’m reading posts about: depression (which I have battled for so long but thought was just because I’m an incest survivor), pelvic pain (which I have all month long), rectal bleeding (I have blood in my stool several times a month for the last year), stomach bloating (my tummy is almost always distended and I have constant tenderness right near my navel), connective tissue (which showed up in the Lap) – none of which I was ever lead to believe had anything to do with endo... I am looking at this and realizing I need an endo specialist. So, we finally arrive at my questions: Any endo specialist in Orlando area? One of my biggest challenges is this weird connection between exercise and depression. I used to be an aerobics instructor – so I know what an intense workout is. Now, I only do very gentle aerobic exercise, yoga and stretching. But invariably I can only go about three or four days of exercise before I get either: deeply depressed, sick (head cold) or injured. I’ve struggled with this for several years and assumed it had something to do with childhood body trauma. However, reading these boards made me wonder. What if somehow the exercise stimulates the endo or the hormones that feed the endo or something???? It sounds bizarre, but the beauty of the internet is letting us get our stories/symptoms out there to others who may possibly relate or validate. I’ve never taken an anti-depressent before but began Sarafem several months ago. It has provided minimal relief on this exercise seesaw. I’ve been exercising every other day now for four weeks straight (the first time in three years) and I’ve cut out nearly all sugar/booze/processed foods. The Sarafem seems to be “taking the edge off” my depression; however, every day is still a struggle – fatigue, vague hopelessness, temperature of 100+, occasional head cold symptoms, etc. And the nights are the pits with lots of nightmares and stress dreams. Over the four weeks I’ve actually gained a pound (deeply discouraging). Do any of you out there have anything like this???? God bless any of you who could slog through all this material! I appreciate everyone’s comments and thoughts. I am humbled to read your stories. My life is frustrating but my pain is not near what yours looks like – I don’t go to pain clinics and do fairly well just with Aleve. I had hoped that removal of the tubal cyst, the endo burning and the connective tissue clipping would alleviate my discomfort; but I’m not seeing much significant relief. TIA, Christina
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