Ovarian Remnant syndrome

[Buckeyegirl]

Hello Ladies....
I had been posting on the ovarian cyst forum, and was told to try this forum instead. I had a hysterectomy in 2004 and then had both ovaries removed at two seperate times a year later. I was diagnosed with Ovarian Remnant Syndrome (ORS) in 2006 and had the large cyst removed which contained ovarian tissue/matter. I was pretty much pain free after surgery, but in early 2008 began to get more intense pain and it was found that I had another cyst. Pain was controlled with pain medication and, I decided that I could live with the pain. Now the pain is very intense and the cyst/cysts....yes two of them measures 5.2 and the other 4.1. My GYN/oncologist took me off of my estrogen and placed me on progesterone to try to shrink the cyst(s). I have only been on the new medication for a short period of time, but the pain is more and more intense and the pain is creeping up my body into my abdomen. CT scan of abdomen showed no abnormalities.
My question is this; does anyone know how common it is to get recurrent ovarian remnant syndrome and then now to possibly have two remnants at the same time? The doctor says that it is rare and he doesn't like to jump to surgery as the last surgery I had was very, very hard and complicated.
Secondly does anyone know how fast progesterone can shrink a cyst? I just want to know how long I should live with this very, very, very intense pain before I call the doctor and request another treatment? I have a good relationship with my doctor, but I don't know if he understands the pain that I have on a daily basis. I currently am a attorney and need to work, but my work has been slacking due to the pain.
Thank you all in advance for any assistance you can shed on this issue.
Tracy

[Buckeyegirl]

Thanks for your comments. I just REALLY don't want to have surgery again, but this pain is "out of control". I have a huge pain tolerance. I know a lot of people say that, but I truly do. I don't expect pain medications to take my pain to a 0 on a scale from 1-10, but a five would be great....heck I would settle for a 7. It's a "wait and see" game that they/I am playing. I have to repeat the ultrasoud in a few weeks and then again in the middle of June. There is hardly any information on this issue. I even had one lady (in the Ovarian Cyst forum) when I was posting there for information actually tell me that I had to be wrong in the diagnosis, and she tried to tell me what I "actually had". Then she proceeded to tell me that she never heard of ORS and that there wasn't such a thing......like I would make that up. Anyway...I divert....
Thanks for your posting.
Tracy

[Buckeyegirl]

Thanks for letting me know what my profile said. I didn't even know that I had to do one.

[nyc lady]

I have what the doctors believe is ORS...I have one mass right now, but, no pain.  It is possible to have a bunch of cysts, masses, etc if you have ORS.  All that is required in your body is just one ovarian cell and they can produce cysts, masses, etc.  There is another woman, Kasie that posts, she has had a couple of surgeries do to ORS.

[marie3B]

You might want to fix your profile info.  It lists you as male. You may get better responses if some info is added to the profile.  There is a woman in this group that has had a bad time with ovarian remnant syndrome and knows alot about it.  I am sure if she sees this she will respond.  Good luck to you.  I am sorry you have to go through this.  Marie