Re: Scared and in search of some help

From: DT (
Mon Jul 25 20:05:29 2005

I am not a Dr. but I'm going to tell you that what your situation sounds like the combination of endometriosis and adhesions are at work. The endometrial tissue responds to the monthly menstrual cycle no matter where it is in the body. And endometriosis/endometrial tissues can travel ANYWHERE. When you have your monthly cycle, the bleeding that happens around the endometrial tissue that has migrated out of its normal lining has nowhere to go. This fluid will sit in the pelvic area until the body's natural defenses clean it up. Some people have no problem with this, while others have a response similar to the flu - with fever, cramping, body aches and severe pain. This is due to the blood causing a mini-infection. I'm telling you this from personal experience. I was in almost exactly the same situation as you about four year's ago. For six months I ended up in the ER at almost the same time every month in line with when my normal cycle would be (except that I hadn't had any period's in 5 years at the time). I would suddenly run a high fever (over 103 degrees) out of nowhere which would last about 5 days, and during this period the pain on my right side was excruciating (lower right pelvic into the groin). I would be throwing up from the pain, and have severe cramping. The first 2-3 times the ER docs sent me home saying I had the flu - drink lots of water and take tylenol. By the fourth time my own Dr. started to take notice and ran a bunch of tests - but nothing showed. The fifth time he kept me in the hospital overnight and I had a CT scan but nothing showed. The last time he said he was keeping me in the hospital until he knew what was wrong. After 8 days of every test in the book the Dr.'s found nothing and thought I had some tropical disease. My Dr. called a surgeon who told me he wanted to do exploratory laproscopy to see why there was pain.

The laproscopy turned into laparotomy real quick. I had a 14sonometer mass of old ovarian tissue, tons of endometrial tissue all wrapped up in thick bands of adhesions which had also adhered to 1/4 of my small intestines - the mass was so overgrown that the different pieces were sharing bloodvessels. Everything was pulled way down into the right quadrant and stuck to my pelvic wall. The fever's were caused by the bleeding endometrial tissue because the blood would just pool and take forever to clear up - an infection would start within a few days of the bleeding.

Long story just to tell you that I know how you feel. Please ask for CT scan with contrast if you haven't had it yet - and ultrasound (external definetly but also internal if you still have ovaries). You could also ask for MRI but I'm not sure if the mass might not show in MRI imaging.

My point is - get as many non-invasive tests as possible to see if anything similar is happening. If you are a good surgical candidate, and you are comfortable doing so, consider asking your surgeon to consider a laproscopy (through the belly button) surgery to tak a look at whats going on. The problem isn't going to bet better on its own - you need medical intervention. Hang in there and best of luck.


>----- Original Message ----- From: "International Adhesions Society" <> To: "Multiple recipients of list ADHESIONS" <> Sent: Saturday, July 16, 2005 5:31 PM Subject: Scared and in search of some help

> Sender: (Nikole) > Subject: Scared and in search of some help > > Hello, > > I am in dire need of some help. I have been sick > for 10 yrs with this excrutiating pain. Doctors just > sent me on my way telling me to take some prozac and do > some yoga....find a little inner peace. This pain is > mindblowing. It is on my left side starting about 2 > inches from my belly button going sideways.

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