My mom died at age 49 with ovarian cancer, my grandma at age 59 with ovarian cancer, and my other grandma had breast cancer when she was 59 but made it through. Since I have stage 4 endometriosis with one ovary removed since it was the size of a grapefruit, and was diagnosed as stage four when I was 25, now I am 43 years old and it has gotten so much worse than before, I am on a Fentanyl patch, totally disabled, developed fibromyalgia, three sleep disorders, and take 9 medications for muscle spasm and pain. I am in bed most of the time. I don't know who to talk to because almost all my relatives are dead and fortunately I have a wonderful fiance who cares for me. I have been permanently disabled for 5 years and become sick if I eat the wrong food, too much of it, or have stress going on and can't handle it. I have taken blood tests where it shows the levels are normal. My stomach is swollen up like a pregnant lady and the rest of my body is stick-thin. There is so much adhesians built up inside that it hurts to lay on my stomach. I have ruptured endometrias frequently and the last lap I had done got infected with a gallon abcess they drained out and I got ovarian remnant syndrome when the doc missed pieces of the ovary she removed. The MRIs show endometrias all over my abdomen with adhesions holding everything together on my colon like a big glob. I am on social security and my medicare won't cover other docs in other states to operate, actually after the last surgery I don't want any operations. What should I do?
I live on Oahu in Hawaii. Right now, I don't have an ob-Gyn because the doctor I have been seeing discontinued his medicare patients. I have a pain management doc, but go to my pcp once a month for medication refills. He has been the primary doc to manage my pain. I have been to 26 doctors in the past 20 years and most of them tell me to have kids to lessen my chances of getting ovarian cancer like my mom and her mom did, and both died young. We are going to try again to have children once we are married next month, but with the stage 4 endometriosis it is like a catch-22. My ex husband and I tried for 10 years with every fertility workup available at that time. Now 15 years later I will try again. Thanks for your response.
I have been suffered with endometriosis for 30 years, just like you.
I went through many surgeries. but never get any better. Everyday live ith pain.I realized this disease is still no cure, more surgery will more adhision, cause more disable. I just walk away from Drs, surgery, pain killers.
I tried very hard to live "normal" to work. but after 30 years suffering.
my endometriosis turn to stage 4 cancer. I am on chemo now.
but Endometriosis cancer may have better survive rate than any other woman cancer.
I hope you search second opioin, look more Drs, to eveluation your condition, make sure your pathology stage is not cancer..
I have long years to struggle to find right Drs.
Even I diagnosis cancer, many "expert" still not understand this disease.
many doctors are so confused with this disease. So I suggest you visit
Mayo clinic, Mass Genenal Hospital gyne oncology department.
Please try to see Dr. Anthony Russell at MGH.
He is a great, smart Dr, he will come up right diagnosis and treatment plan for you.
Most important is your courage, never give up. Believe in yourself.
I'm 21 years old and I have stage 4 endo and have already had my left ovary removed, and had 3 different surgeries with one being a emergency surgery because I had 500cc of blood in my stomach. They said it was because of my ovarian cyst in my right ovary. I'm in the army and every day I suffer with pain so I know how you feel. My mom had ovarian cancer and endo at my age.I'm constantly going to get my blood tested and scans done to make sure I don't have cancer, because of my endo being so severe. My doctor said it can turn in to cancer and it can spread through out the body .
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