I was functioning under the assumption that I had endometriosis. It seemed the most likely disease based in the information given me by my doctors. I underwent a diagnostic laparoscopy and waited for my surgeon to follow up with me.
It’s Not Endometriosis
As it turns out, I don’t have endometriosis and my internal structures appear normal. I’ve been referred to a pain management specialist. It has been suggested that I might see a neurologist as well. “If we can’t find the cause, we can at least treat the symptoms. You may have a rare form of cystitis, or you may not. Please try to focus on the good news: you don’t have cysts or tumors or scar tissue,” said my surgeon. I admit I was very disappointed in a strange way. It’s the very human need for an explanation. Without a known cause, how can we stop this from returning again?
Four days after surgery, I got food poisoning. I recovered after five days.
However, now I am terribly dizzy and have severe fatigue. Is it related to the endometriosis-like abdominal pain or something else? I can barely stay awake. In fact, I sleep most of the day and night. It’s not sleepiness. I simply cannot stay conscious. I’m always hungry and eating, but I’m losing weight slowly. There is ringing in my ears on and off. I find myself confused by simple tasks. I tried to fry an egg on a good day and found I couldn’t lift the pan. I’ve fainted twice last week: once after a blood draw, and once just in my home after a stressful conversation.
My general practitioner has run blood tests for anemia, vitamin deficiency, diabetes, and thyroid disorders, as well as a comprehensive blood count. He also told me that most of the time, when trying to diagnose fatigue and dizziness, these blood tests come back normal. I should be prepared to search for other answers. Diabetes and thyroid disorders run in my family, and I’m really hoping it’s easily found out so I can find treatment soon. My ears were checked for infection, and they appear fine. He also suggested that it could be severe depression, but I’m not so sure. I’ve had depressive episodes before, and while I was sluggish and slow to make decisions, I wasn’t this dizzy or weak.
Symptoms that Led Us to Suspect Endometriosis
As for the pelvic pain, it started in late November, very sharp and stabbing on the right-hand side over my ovary over the course of two days, growing rapidly more painful. The ER docs said it was a ruptured ovarian cyst, and noted that when pressed, my left ovary was very tender and painful as well.
That pain was supposed to heal in three to five days and just didn’t, growing less stabbing. It was a constant ache, day and night, for four months over my right lower quadrant with intermittent sharp cramping. When pressed, my left lower quadrant was just as painful, but didn’t throb or cramp on its own.
A course of progesterone halved the pain. Birth control dampened it a bit more. Hot baths and heating pads also helped somewhat. Exercise made it much worse, as did standing and walking for even short periods or leaning over. Pelvic exams and ultrasounds also hurt very much. Going to the restroom hurt terribly.
What really helped was removing the benign tumor in my colon. Some of the pain had been very bad intestinal cramping throughout my abdomen. I have most of my mobility back now. Occasionally, it will feel like there are hot, throbbing points in my pelvis for about three to six hours at a time, usually on the right side. Advil, a heating pad or ice pack, and lying very, very still help.
Also, since November, my periods have been dreadful. Terrible cramps like I’ve never had, and the week before and after my period, I’m very tender throughout my pelvis and it feels like I’ve thrown my lower back out. They never used to be this way.
After the laparoscopy, where everything was found normal, I had sharp, hot throbbing for several days over my right ovary again. The surgeon said she has no explanation except for perhaps a very uncommon form of interstitial cystitis, but I don’t have half of those symptoms. Sitting in a moving car and long walks cause a sharp ache on the right side of my pelvis, but it isn’t constant like it was for three months beforehand. The pelvic pain comes and goes, and it’s about one-third of its former intensity. I don’t know what would cause it to come back full force and constantly, but I hope it never does.
After seven months of poor health, I’m baffled by all my tests returning normal. If it’s not endometriosis, then what is it? If these tests come back normal, I’m not sure what other steps to take.