I don't think how profoundly my life has changed, and how much it affects my family, really struck me until my last doctor's visit. My husband insisted on going with me to that and any future appointments. I tend to actually downplay anything that bothers me, because I was raised to believe that complaining about pain or illness was whining, and unnecessary.
Pain is a continual, daily thing, and I wasn't even treating that symptom until my neighbor called me after meeting my husband in town and told me that he was very alarmed and that it was cruel to make family and friends watch me hurt and not do something effective to treat it. My family physician prescribed me pain medication at the next appointment I made with him and I've been on it ever since.
First referral was for a colonoscopy, because I'd been having intermittent issues with inability to pass stool. I am not calling it constipation at this point anymore, because it resolves itself in two to three days, and is not affected by stool caliber (I take miralax daily now, and everything is soft, and I still have days when it takes a lot of straining and what I pass is soft and the size of my pinky finger). Frequently I feel bloated and "full". My appetite decreased to nothing before pain medication, and still isn't what it used to be. I snack constantly, though, to try to control the nausea.
The colonoscopy found and removed and abnormal growth, and I go back to have that checked in six months. It didn't find a reason that explained the pain, though - no obstructions, inflammation, diveriticulosis, etc. I went back to the doctor after the colonoscopy, which is when I got the pain medication, and a referral to an OB/GYN.
That was a terribly frustrating visit. She said she saw multiple abnormalities on the ultrasound (but wouldn't tell me what any of them were except for the thickened endometrial stripe) and told me we wouldn't discuss what was wrong or treatment options until she could get an endometrial biopsy back. I told her I though my symptoms could be described by endometrial adhesions, and though I'm awful late to start complaining about symptoms (40), it wouldn't surprise me if I would have ignored earlier symptoms. She told me the left ovary was covered in fluid and that most likely I had an ovarian cyst rupture. The right ovary had multiple dark patches on it (I counted six), and the left ovary was just a dark blob on the ultrasound. I kept telling her I had consistent and severe abdominal pain on my left side, and expected that a thickened endometrial stripe, if it were causing issues, would cause pain more in the middle than to the side. She assured me I probably just had an ovarian cyst rupture. I told her the pain and issues it caused was still there, and she assured me that maybe I was just still a little sore because the fluid hadn't all been reabsorbed.
The pain continued, and the "spells" - don't know what else to call them - when I do anything for very long I get very pale, break out into a cold sweat, and if I push it, even will begin trembling - the pain can get that bad, have increased in frequency. I am now at a point where I can't plan on more than about twenty minutes of activity without a rest. There have also been bladder changes now - peeing is slower, if that makes any sense.
I spend 90% of any day resting at this point. If I try to be very active and take rests between the next day I get sick more easily and have more problems. We are looking for another OB/GYN, because I was terribly disappointed in the first one, and my family doctor agreed with a lot of my thoughts (the OB/GYN insisted I needed an endometrial ablation, and wanted to do it in the office with no anesthetic because I don't have health insurance - as far as I can tell it is mostly a convenience operation), and said we should get a opinion from a doctor I'm comfortable with. My family doctor says I need a laparoscopy or laparotomy to get a definitive diagnosis to rule out endometriosis or cancer.
I am absolutely shocked to have my body so inexplicably fail me. I have gone from a woman who painted the entire interior of a two-story house in two weeks (while working) to someone who can't even vacuum her house without getting ill.
Has anyone had a similar experience? Are there any other possibilities I should consider or diagnostic tests/imaging that could give us answers without surgery?