QuestionHi there, I have never used one of these things before so I hope I am able to get back to this site to find your answer!
I am a 29 year old recently diagnosed with endometriosis after 5 years of extreme back/neck/arm pain, which later came to include severe abdominal pain on the right side under my rib cage. This pain was extreme during my period, but was still pretty terrible the rest of the month. After many trips to the ER on a stretcher and monthly morphine shots, I finally convinced a doctor that I had endometriosis. They did a laparoscopy 10/06 and found it all over my organs and liver and abdominal cavity. They were unable to remove it from my diaphragm to prevent risk to my lungs. I went on Lupron for 3 months and while it worked for the first month, I began getting back and neck pain, arm pain, abdominal pain and started bleeding. I have just gone off the lupron and am back on the birth control pill. I saw an endo specialist who explained that the pain in my back and neck was a consequence of the tissue on my diaphragm (only because I asked), where the phrenic nerve is located. This pain is interpreted in my neck/arm and back although there is nothing wrong with them in particular (I have had so many MRIs to look for nerve damage and slipped disks!). This was such a relief to finally, after years of going to an ortho who told me there was nothing wrong with me, find out that there was a reason for my pain. So, I asked the doctor about surgery for the endo on my diaphragm and he said I should stay on the pill to see what happens. While I might have been willing to do that in the past I want to move on with my life and prefer a more aggressive approach at this point. Prior to surgery, I used the pill and Chinese herbs (which were great for reducing pain), and had some reduction in pain; however it quickly returned to high levels that were unbearable. I have been out of work for 6 months due to the pain and do not want to "wait and see" any longer. I have done some research and understand that I have two surgical choices. I can either have a laparotomy or a laparoscopy. I have been reading the report of Dr. Redwine, in Bend, Oregon, and he advocates the former (but he also has a booming practice as a result of the surgeries so it is hard to know how objective his opinion is). I want to know if you have any advice or information about having the surgery, and about whether or not you have heard about the benefits of laparoscopy or laparotomy for endometriosis of the diaphragm. Also, I have endo of the bowel that they couldn't reach but I will save that for another conversation. I need to deal with one organ at a time!
One final thing. I want to write a book about this and assemble case studies of lots of women as well as outcomes......
Thanks so much for your help!
Eliza
Thanks so much for reading this. I am feeling so frustrated and helpless and it is so hard not to have doctors who know a whole lot. I understand that it is hard because it involves a lot of systems, but at the same time it is kind of pathetic that I have diagnosed myself twice and no one was able to find the source of my pain all these years!
AnswerHi Eliza,
I am sorry you have had to go thru all of this! The Lap procedure is an exploratory surgery designed to search for endo and the severity of endo. At that time a doctor could choose to remove or scrape but as a whole, it is primarily used to diagnose endo only. Other surgeries might include removal of organs, cysts, fibroids, etc.
If you haven't actually had a Lap, I'd say, go for it. It would give you a real idea of what and where endo has ended up and then you could go from there. I had the Lap and it is pretty simple and painless. At that point my doctor did scrape and remove alien tissue. I also was found to have cancer of my cervix and my doctor ended up finding additional invasions of endo on my left ovary. At that time he removed half of that ovary.
I would say, a great place to start, would be the Lap. It will help your doctor identify exactly what he/she needs to treat.
I really feel for you and hope you find some sort of answer as to the extent of you endo...It is really a crippling disease that most people do not understand. Best of luck to you.
Martha
