I have extreme pelvic pain that hasn't been diagnosed....?!


I have extreme pelvic pain that hasn't been diagnosed....?

So i've had horrible periods and alot of pain since 16. I came off birth control and now the pelvic pain that i have (which feels like its over my left ovary) is so extreme i can't even function. It is a horrible, sharp shooting pain. Both the doctor and myself assumed it was endometriosis as i fit all the symptoms but she found none! My question is does anybody know what and why i have this pain?! I am so frustrated having no answers and it feels like people don't believe i'm in so much pain as there isn't a diagnosis. Has anybody gone through this before???? HELP!


I know exactly where you're coming from... two years ago, I could have written this question myself. I was having terrible pelvic pain, back pain, horrible periods, frequent UTI's, bleeding between periods, and unbearable pain. It started about five years ago, but two years ago it progressed to the point where I couldn't get out of bed and get dressed or do ANYTHING. Sex was horribly painful as well. My poor husband had to carry the load for both of us, as I couldn't work since the pain kept me bedridden.

The docs couldn't figure out what was wrong. They did CT scans, Ultrasounds, X-rays, pelvic exams, the whole nine yards. I worked my way up from NSAIDS and birth control to Percocet, which helped the pain (finally) but the doctors would put me on it for a month or so and then snatch it away so I didn't get "addicted". They told my husband and myself that it was all in my head, and I wasn't sick, I was adrug-seeking, blah blah blah. Finally, I moved back to VA and found a doctor who was willing to do a laparoscopy to try and diagnose the problem, which he expected was endometriosis just like you.

What he found was a condition called Pelvic Congestion Syndrome. PCS is pretty common, about 20% of women with chronic pelvic pain have it, but it is almost impossible to diagnose because. What it is, is varicose veins in the uterus. The reason it's so hard to diagnose is that it doesn't show on imagfing studies, and during a pelvic exam the woman is lying down, which removes the pressure from the veins, so it can't be diagnosed that way either. There isn't really a cure for it. The only two things that can sometimes alleviate the pain are a total hysterectomy or a procedure where they put metal rings in the varices (swollen veins) to prevent the blood from backing up into them.

What my doc did for me was put me into pain management. It has saved my life! My marriage was on the verge of collapse and I was nearly suicidal from the depression that came from the pain and the doctors not believing me. My pain doctor is wonderful, and the medication has alleviated my pain to the point that I am a level 1 of pain on a BAD day with my meds. I am on Oxycontin, OxyFast for breakthrough pain, Depo Provera as brith control (because it stops your preiod altogether), and Marinol for nausea. I am nearly pain free, as I said, and I can now work, drive, have sex with my husband (lol), and do anything I want. The medication doesn;t make me dopey or sleepy and I NEVER get a "buzz" from it, I take it exactly as prescribed and have been on the same dose for a year now. It truly turned my life around 180 degrees. Talk to your doctor about a laparoscopy, see if you have PCS. Pain can be a disease that is as debilitating as cancer and NOT just a symptom. You have a right to be pain-free, so talk to your doc, and if you do have it, see about getting into a pain clinic. It can change your life in ways you never thought possible. My symptoms were IDENTICAL to yours, even the pain over the left ovary. DON'T let people scare you and tell you you'll become an "addict" in pain management-- you WON'T, you will merely become dependant on the meds, which is VERY different. The pain doc will monitor you closely and make sure you take your meds properly, for your protection and theirs. Also, the birth control really does help alleviate some of the pain, though not much, so you might want to go back on it.

If you have any other questions or just need to talk to someone who has been there feel free to e-mail or IM me ANY time. Good luck. I know how it feels when no one thinks you're sick, but you really are-- my husband tried to put me inot rehab because the docs told him nothing was wrong and he didn't know what else to do.

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