OK girls,
I am asking for your help one more time. I posted a lengthy explanation about a month ago and got no response. I am begging anyone who has ever read, heard, or experienced this to please write me!!!
I have had pelvic pain for years. It would come during mid cycle and go away with in two weeks for as long as a year. One day it hit and never went away. My symptoms are “Twisting pain in lower right side” , when periods are late it feels like everything is swelling and going to drop out!, my periods have lasted 72 days at one point!!! feels like a bladder infection but urine is clear of infection, pee blood sometimes, Irritable bowel syndrom, elevated white blood count when twisting is severe! Can’t walk, sit, lay or especially ride in a car when the twisting is at it’s highest. I have been down every avenue of medical doctors, specialists, and procedures. MRI, CT scan, Ultrasound, colonoscopy, nerve conduction tests, bladder scope, physical therapy, reflex ology, chiropractors, 2 laparoscopy procedures which show NOTHING!!, pain medication, irritable bowel medication, nerve medication, bladder medication, birth control pills and lastly LUPRON!!!!!!!!!!!! Lupron has been the only thing that made the pain go AWAY!! That is until I was done my first 6 month treatment. The pain came back when I got my period. So, back on Lupron I went for 2 years at twice the regular dose!!! I just had my second lapro done and the doctor said there is no endometriosis nor was there any evidence of me EVER having it!! Now, he found a problem with the bowel “looked really inflamed” so he feels all along this was the problem. The GI doctor said Lupron wouldn’t have helped that! I said, I agree because I had too many GYN symptoms. However, my reproductive endro. Said he didn’t see a problem during surgery so it must be the bowel and cant explain WHY LUPRON HELPED!!!! ANYONE ever heard of LUPRON helping with anything other than endometriosis?? One more thing, anyone experience memory loss on this medication and did you return back to normal after you were off?
Please someone help me. This has been a long hard battle and I don’t think I can continue with being shuffled from doctor to doctor only to have them tell me “I don’t know” It seems to me that they are missing something if Lupron helped with the pain!!!!!!!!!!!!!!!!!!!!!!!!

I only have done a very lo dose lupron flare on my IUI cycles . I never took Lupron for endo or pain . Dose was so low I had no noticble symptoms .Have you gone and gotten a second opinion from another RE ? Good luck to you

Hi Pippin...I am sorry about your pain...I really don't have an answer for you where this pain may be coming from....When I first started reading, I thought that for sure you had Endometriosis and PCOS....but you said later in your posting that you did not....

I know it really suc*# when you have to go from Dr. to Dr. and even though you tell them that you have been treated or tested for something he may be wanting to check on, he repeats the test...(Sometimes I get so mad that i think that the Dr. is out for more money...but then I tell myself...it's the medicine talking!!!)

As far as Lupron...YES ...DEFINITELY ...YES I have experienced memory loss...Not to the point that I don't recognize my son or husband...but I do forget VERY easily now!!!!

I hope everything works out for you and I hope in the near future you will soon be pain free!!!!

[This message has been edited by snoopysmine (edited 05-23-2003).]

It must be horrible and frustrating to be going through this. I can't help too much but what I would do is try and go to a top teaching hospital with all your records. I see you are in Pa. I would try and make an appt. with (not sure if I have the name right) University of Penn?? Do you know what place I am talking about. Gosh, I am not on Lupron and the name is not coming to me- sorry! That is my best advice. So many people are misdiagnosed with many diseases and the only way they finally find an answer is to insist there is something wrong and keep going to specialist. I know it is time consuming but hopefully it will be worth it. Hope this info helps.

Hi Pippin - I'm so terribly sorry about your pain - that is just awful to have to endure a life like that. I cannot believe that you have no endo! That is a great thing though - trying to be positive. http://www.healthboards.com/ubb/smile.gif I've not heard much about Lupron, so I can't really answer your questions - but I just want to welcome you to our board!

I hope you can get the answers you are seeking soon!

Pippin, my doctor put me on Lupron because I had fibroid tumors inside my uterus. This caused me A LOT of pain, and sometimes my periods would last for weeks. Once, I passed out cold from blood loss. If they've done ultrasounds and laps though, seems like they would have seen this? I am so sorry you are going through this. Best wishes to you.