Woman With Chronic Pelvic Pain From Endometriosis

Dear Dr. Ramirez,

I am writing from Saint Louis, Missouri. Thank you for taking time out to answer my questions. I will try to be as brief as possible.

I am 31 years old and I was diagnosed with endometriosis at age 19. I have had 8 laparoscopies to remove endometriosis, along with many ovarian cysts, one which was an endometrioma the size of a baseball in which they had to remove most of my ovary along with it. I have had many rounds of the Lupron injection to put my body into temporary menopause (4 rounds for 6 months each time). The first round worked, all rounds after that did nothing. My endometriosis actually got worse each time. I have tried birth control pills and it did not work. I have also had precancer of the cervix and I had a leep procedure to remove that.

I cannot find an endometriosis specialist close to my area and as much as my obgyn has done for me, he has come to the point where he is kind of shrugging his shoulders not knowing what else to do for me except give me pain medication. (Vicoprofen, 7.5mg, 2 pills every 6 hours). I have one child, she is 12 months old and I would like to have another child in the future. I suffer everyday with constant pain, my job is suffering because of it, I’ve missed so much work that I’m afraid I may lose it and my family life suffers because it is hard for me to clean, cook, and just do normal everyday activities because I rarely feel good. I do not have family other than my daughter and my fiancé.

I know you can’t give medical advice but my question is, have you heard of cases like this before and people have found hope? I honestly don’t know what to do from here. I’ve seen other obgyn’s and they are not able to give me any solid answers either. I feel helpless, this disease has completely taken over my life. In addition to the constant pain, this year alone I have had 6 cysts burst on my ovaries that cause severe pain. As of August I am now having 2 to 3 menstrual cycles a month and other than the cysts, my obgyn has no idea why all of a sudden my periods have become abnormal. They have never been abnormal before. Do you have any ideas as to where I can go from here to handle this disease as well as the pain that comes along with it? I am not wealthy so I cannot afford to travel to other states for medical care. I am just unsure of how to handle this and where to go from here with this disease. Any advice or help would be greatly appreciated :) T. from Missouri

Hello T. from the U.S. (Missouri),

You have chronic pelvic pain resulting from prolonged endometriosis.  You don’t mention when the last laparoscopy and Lupron treatments were but if it has been a while, then the treatment plan would be to repeat the laparoscopy to excise as much endometriosis as possible, follow that with 6 months of Lupron plus add-back therapy, then go on Depo Provera which you should continue until you decide to get pregnant again.  Depo Provera is different from the birth control pill because it has no estrogen in it and estrogen is what helps the endometriosis to grow.  In addition, having periods is the mechanism thought to cause the introduction of endometrial cells into the pelvis.  Depo Provera works by antagonizing the estrogen AND stops you from having periods.  Once you decide to become pregnant again, you may have to resort to IVF because of the extensive endometriosis and pelvic damage.

This regimen may or may not help with your pain.  You are at the point where your nervous system has been persistently traumatized and now has developed pain stimulation pathways.  It is a neurological/psychological problem that is very hard to treat.  In other words, the pain nerve pathways have been stimulated so much that they are now on all the time.  You need to see a specialized center that specializes in chronic endometriosis and pelvic pain.  Ultimately that will be your only solution.  You are NOT the only one with this problem.  It is very prevalent and has undergone much research.  Treatment can be successful if you see the right specialist. Hang in there and don’t give up.

Good Luck, Edward J. Ramirez, M.D.