Okay so its been a while since you posted and I wanted to give you some relief that my CA-125 was 78 during ovulation and I was diagnosed with stage IV endo. The CA-125 also detects inflammation in the abdominal cavity.
Have you ever been tested for STD's? The only reason that I am asking is because I was diagnosed early this year with Gonorrhea that was dormant for 4yrs. I had mid cycle bleeding, bleeding during sex sometimes and serious discharge, watery etc. I had no clue I had this as i didnt think that my discharge smelled at all.
On another note, before my surgery I was severely nauseated and was in a lot of pain with acid reflux and the GYNO asked me to go on Lupron and I refused because they couldn't confirm if I had endo or not. After the surgery I went on Lupron for 6 months and I should never have. I felt bullied into taking it and I suffered a lot because of it.
Let me know how you are and what you have done during this time, maybe I can answer more of your questions.
I have a confirmed case of stage 4 endo. I do not use Lupron. I have chosen fish oil to see if it helps. You are not required to use Lupron if you do not want to.
I was confirmed with stage iv endo last June and had a laparotomy performed. I was in severe pain as well. Nausea and rib cage pain as well. Could not even sleep while awaiting the surgery. No position was comfortable. My CA 125 was at 71. I had two chocolate cysts that were around 6 cm x 6 cm x 6 cm, the size of a tennis ball. My gynecologist wants me to take depo provera until I am in menopause. I am only 41. I refuse to take it afraid of all the side effects. I agree we are almost made to feel like we HAVE to take it. My surgeon was very forceful about me having to take it. She does not know I never filled the prescription. Not even willing to take Alesse the birth control pill. I am just waiting and seeing. So far 17 months later I am still pain free since my surgery.
Thats great to hear Joe199
Sorry new on the board but totally know how you feel. I am 26 years old with severe stage 4 endo. They tried to get me to do the lupron but I declined it. They are saying that after doing the ivf and hopefully having a baby they said that I HAVE to have a hystorectomy.That it is unavoidable... do any of you know if this is the only way to deal with the endo. I dont know what to think at this point. I do know I will NEVER do the lupron. I have two friends that I personally know with endo. both of which did the lupron and are having a hard time even a year after being off the lupron with their cycles not being regualr or returning at all.... any info would be appreciated.
Thanks in advance!
Having a hysterectomy will not solve the problem. If you have deep lesions and you have the surgery and they miss them it will still continue to grow. I would avoid a hyster at all costs unless its absolutely necessary.
Here is a link from one of the places I used to go often to read.