undiagonsed illnesses....please help

I have been currently struggling with a condition for two years now and no one seems to know what is wrong with me....can anyone help?
I was diagnosed with PCOS (polycystic ovarian syndrome) about two years ago when my doctor noticed that I had irregular periods. They put me on birth control and I have been doing fine since. However, a new “illness” started. These “episodes” that my doctors call them involve the following symptoms in order:

1) Usually late at night I start to have these bad stomach cramps, first it feels like I’m just hungry, but then they get progressively worse. This pain usually lasts 4-5 hours.

2) The pain continues all along my lower abdomen, and it gets so severe that I begin to get nausea and I throw up. The throwing up usually lasts about 6-8 hours, with 1 hour intervals between the throwing up.

3) After the nausea goes away, a different pain surfaces, it feels like a sharp, hot poker is getting rammed into my stomach and lower abdomen. This pain makes it very hard to move, so I usually just lay down and wait for it to lessen. This pain usually lasts around 5-6 hours.

4) Finally as the last pain begins to lessen, for the next few days my abdomen and lower stomach is sore to the touch and it hurts to stretch and move around a lot. Eventually after a few days, the pain completely goes away and I am fine.

At first my primary care doctor and women’s health doctor thought these “episodes” were due to my PCOS, but upon further review they determined that it wasn’t and sent me to various different specialists. I have been to a gastroenterologist, metabolic specialist, endocrinologists and all of them were baffled as to what to do with me. A through blood workup was done, many ultrasounds, urine tests and a barium sulfide test to take pictures of my intestinal tract have yielded few results.  The only results that came back from all the tests were:

1) My body has trouble producing L-carnitine, so I am currently taking a supplement for that.
2) I am slightly anemic, so I am taking iron pills for that.
3) The cysts in my ovaries are slowly going away.
4) And my doctors prescribed me pain pills to help to deal with the pain, but they don’t really help.

I am at my wits end. I am 19 years old and I have been dealing with these “episodes” for two years now, they have no pattern to them, believe I’ve tried to track them. All I can say is that they happen about once or twice a month and it leaves me incapacitated for 24 hours. Please someone tell me what this is or how I can deal with it, because it has been making my life hell.
Please someone help me.
Eowynbeth

[Jaybay]

It sounds exactly like what would happen to me when an ovarian cyst ruptured.  I didn't have PCOS, but every 4 or 5 months, BAM!  I'd blow another cyst.  Sometimes they go all at once and literally would knock me to my knees.  Most of the time, I reacted the same way you did: first with the crampy pain, then the nausea sometimes with vomiting, and then the pain really got rolling.  The episodes would last anywhere from 2 days to a week depending on how long the fluid in the cyst took to drain.

I'm somewhat surprised that your doctor ruled out the PCOS as the culprit.  You say you still have cysts, but not as many.  All it takes is one.  I also discovered that the birth control pill was at the root of my cyst issues.  It just wasn't quite stopping my ovaries from trying to do their thing, so the normal cyst formed by the egg rupturing would just keep on growing.  I couldn't take stronger birth control pills due to side effects, so gave it all up.  Didn't have any further problems for many years until I hit the peri-menopause stage in my mid-30's and my hormones got out of whack.

You might consider a second opinion from a different gynecologist.  Also, you mention you currently see an endochrinologist.  That specialty also has a sub-specialty: reproductive endochrinology.  This specialty developed along with the increase in infertility treatments because women were waiting so long in life to have babies.  If you can find one, you might have better luck getting a diagnosis.

Have you tried maybe getting off the birth control pills for a while to see if things improve?

[painmd]

Eoynbeth:

What pain pills are you on, how often do you take them, and how long have you been taking them? Believe it or not, there may be a correlation. These syptoms (symptoms) are possibly of slight withdrawl (withdrawal) or a reaction. Also, make sure you use a stool softener or high fiber diet when on narcotic pain pills- they will bind you up so bad and you won't be able to have a bowel movement for days, which causes severe pain in the area you describe. What other meds are you on hun?

Regards,

Dr. T. Palmer, MD
Emergency Medicine Dept.

[eowynbeth]

painmd:
Thanks for your reply.I have been on a range of pain pills and it has been steady increasing. It started out with taking one Vicodin, and I would feel better, but then my body started getting use to the drug and stopped helping with the pain. My doctor prescribed me something stronger now, called Darvocet and that has been helping whenever I have my episodes. I only take them when I feel an episode coming on and that is about once a month.....they don't stop the episode from coming, but they take the edge off the pain a little bit. I have been taking these pills periodically since these episodes starting happening, so about 2 years? I am also currently taking a L-carnitine supplement (Levocarnitine), I'm on birth control (Yasmin) and I take generic iron pills because I'm slightly anemic.
I hope this helps
Eowynbeth