Hi, I've been barking up multiple trees about this since 2007.
I've been experiencing episodes of severe, diffuse abdomen pain for almost a decade. I am a 27 year old female. I have a history of hormone abnormalities:
-early breast development/puberty, age 7/8 I was too young to assign much significance to getting a bra.
-The puberty was not obesity related - I was 5'5'' by age 8/9 and weighed about 108 lbs.
^Androgen/growth hormone excess?
-hirsutism: chin, upper lip, eyebrows, abdomen, chest...
-Irregular periods - stopped when I was 19 for a few months. I was put on the pill to even them out, and whenever I go off it they stop again.
-Rapid weight gain, slow weight loss. Yeah everyone says this, but I exercise my *** off and really watch what I eat. WTH, body.
So you guys prob guessed:
-PCOS diagnosis...Without cysts. I have the LH/FSH imbalance without any observable cysts, which is why the abdomen pain is weird.
Three abdomen and vaginal ultrasounds, all ok.
One CT scan, no cysts, found a small amount of 'free fluid' and 1 herniated disc in my lower back. I also have a 'back mouse', a lipoma on the low right side of my back. My lower back bothers me periodically.
The pain: I've now been to the ER 5 times because of it. It starts in the morning and rapidly escalates - the worst bouts had me screaming in the waiting room. My abdomen is distended, but it's not constipation. Status: dizzy, BP average 130/90 during the episodes, it is normally about 110/60. I've had the standard battery of tests a few times, and some of the weirder ones. You know how it's hard to get doctors to look at all your tests? I took matters into my own hands, got copies of all my readings, and made some spreadsheets. I noticed some trends for the ER visits and a couple 'baseline' labs, which I will mention later.
The main thing that's getting me about the pain is because it's escalating, and bringing greater confusion and weirdness with my limbs with it. The last two times I got tingling 'pins and needles' in my extremities, and a weird sense of sluggishness in both my limbs and my head. I could have just been upset, but it stuck around for a couple days. I was getting winded walking up a single flight of stairs, chest hurting,etc. Running 4+ miles is my idea of a good time, so that's weird.
The last, worst one was after a month of feeling horrible after being put on a different birth control pill to regulate my periods - I also have been diagnosed with narcolepsy and the Nuvigil i was given for that was lessening the effect of the birth control pills, and I was breaking out horribly. The hyperhidrosis was getting worse. So my gyno put me on a stronger one and it hit my energy level hard - I went from 145lb to 157lbs in 2 wks without changing my diet or exercise level. In retrospect I should have known, as some of the 'prodromal' stuff was sneaking up on me: the sluggishness, the abdominal distension and nausea etc.
The pain is diffuse and hard to pin down - sometmes starts under my belly button, but feels like it's everywhere. My stomach is sometimes distended, but not always. Last time I was not constipated or gassy - had a bowel movement the previous night. Also, when I get gas/comnstipation it's usually just nausea and discomfort and 3-4 extra inches of abdomen distension, not this stabbing pain.
I was ultrasounded yet again - not a cyst. The tech offhandedly commented that my spleen looked a little big, but when I got my hands on the official report there was no mention of this. ???
I've been to 3 gynos, 2 endocrinologists, and 1 gastroenterologist. The gastro doc did not think I had chron's, celiac's, or divreticulitis. She said IBS but the other ppl I know with it do not experience this. The 1st endocrinologist was suspended for coming to work drunk shortly after he did my labs, but I tested ok for the 24hr cortisol. I got the most common CAH check - OK. Porphyria, the urine tests - OK, but:
Porphyria tests for some versions only work if you are in the middle of an attack. I observed dark urine twice. However, this is unlikely.
Endometriosis was also suggested. My current endocrinologist wants my gyno to do a laproscopy and look around, but she doesnt want to.
I tested negative for glucose intolerance with my current endocrine doc (yet again - they keep thinking I have diabetes, despite me having normal blood sugar every.single.time). He put me on metformin anyway. I figure it can't hurt.
The narcolepsy is odd too. I wonder if it's linked - so few docs think systemically. Plus the 1st neurologist I went to missed it, despite seeing a symptom. It took a sleep study to diagnose me.
LOW cholesterol...LOW HDL/'normal' LDL overall total low
Various things consistently teetering on the brink of insufficiency or overload. So it's not a one-off thing.
1. Low lipase in diabetes is associated with high cholesterol...And I don't have diabetes. That didn't cause the PCOS.
2.HDL = cholesterol en route to the liver, from wherever it was utilized. Low HDL, not a lot of 'leftovers'? Is cholesterol being consumed at an abnormal rate or not leaving the 'usage' destination cells as is normal? LDL receptors already full???
3.LDL picks up cholesterol molecules - it enables cholesterol transport in the bloodstream so that cells can use it. HDL is a carrier molecule identical in structure (almost) to LDL - it 'picks up' cholesterol molecules and transports them to the liver. LDL-C = cholesterol in transit (sitting in a LDL, waiting in line). HDL-C = cholesterol in a HDL, finished for the time being, headed to the liver.
4. That 'good vs bad' cholesterol thing is a vast oversimplification and irritates me but I digress...
5.Maybe cholesterol isn't getting where it is needed - Ammenorrea, misc borderline blood serum insufficiencies, obvious androgen excess...
6. Overall thought: Not getting enough raw materials from cholesterol to make water-insoluble proteins (ie. Albumin), enzymes (ie. Lipase), hormones (the end product estradiol…) etc.
7.Either accidental malnutrition (unlikely, triglycerides are high) or something is 'eating' the cholesterol before it gets where it needs to go (no idea).
8. Overall thought 2: The blood serum readings are mostly within spec, but several are routinely borderline insufficient or borderline high
9.This is odd from a systemic standpoint - equilibrium is off
Aaaand that's it. I have numbers if requested. I tried to hand off my memory stick to my endocrinologist, but I haven't heard squat back.
I haven't had one in a little while, but I promised myself last time that I wouldn't forget how bad it was, and how scared I got.