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Ovarian Rem. syndrome can anyone offer advise

i was diagnosed with endometiosis at age 12, at age 19 i had the first of my 25+ surgeries to include a hystorectomy at age 24. i have had my ovaries removed on a numerous occassion, the last time being oct. 05 since then my left ovary has been found again. i have been diagnosed with ovarian remnant syndrome and cant find much on it. i have seen 40-50 doctors in pa and ny and all send me away, some say its in my head, some say my condition doesnt exist, some say my pain is phantom pain and some say im a drug seeker. i even had one tell me to see a counselor and get hypnotized and all my problems will go away. in the menatime my pain is increasing in intensity and never goes away. any ideas or suggestions as to where to go for good help?  i am desperate.  i cant live in this much pain any more.  i even get such severe rectal pain i cant do anything but scream until it eases off.  HELP PLEASE!  i am afraid this may even hurt my 10 year marriage if it doesnt get better soon.
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Gosh, I can't tell you how glad I am to find this site! I too have been suffering with recurrent ovarian remants. I had parts of both ovaries removed in high school - 20 years ago - due to cysts/dermoid, etc. Then, in 2003, I had a total hysterectomy with both ovaries removed due to endo and massive cysts. The left ovary was embeded in my abdominal wall and all adhered to my ureter and artery (don't know name of it). Dr. told my hubby and mom that I'd have to have a repeat surgery in years to come as he couldn't be sure he got all of the left ovary. Well, 11 months later (in 2004), I had abdominal surgery (this time out of town as the GYN who did previous surgery wouldn't touch it again and referred me to GYN Oncologist at the University of Florida Shands Hospital). Guess what....same pain/pressure returned in 8 months!!! Does anyone else know how to describe the pain - I try but it's hard to describe other than a pain/crampy/pressure. Any way, I had another abdominal surgery in 2005 to remove the remnant by the GYN Onc at Shands again. All lab tests came back in 2004 and 2005 as ovarian tissue, no endo. Now, only 5 months post-op, I'm back on pain meds and my ultrasound from last week revealed another left ovarian remant, this time bigger than it was when they operated 5 months ago. I'm loosing my mind! I feel like I'm a hypochondiac and my hubby and mom are supportive, but this gets old. I sometimes just want to run away but I have no where to go! Does anyone know of any specialists who treat ORS? Has anyone heard of radiation being used and the results? I need to get this resolved, but my mind, body and finances can't take another surgery at this point. Although, I can't live with the pain.  Also, I can't deal with the constant bloating!  I'm only 37 and I should be enjoying life and I'm too beat by the end of the day, I can't really be there for my family (have a 7 year old little boy). Thank you for letting me vent - from the posts, it sounds like you all can relate. Kim
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i am 27.  im thinking it will never end.  i did alot of research (not as much as i would have like considering ovr isnt widely publicayed) but came to this theory-cancer is basically an abnormal rapid cell growth, ovs is very similiar, so with that in mind, i wonder if chemo or localized radiation treatments would benefit women with ovs....i may be way off on this, but it may be a viable option.  i am going to ask the next dr. about it.
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now i may sound stupid or way off but from what i learned  cancer is just basically an abnormally rapid cell growth, as is ovarian rem. syn. and seeing how cancer is treated and the results from it, i really believe it may be beneficial to apply he same ideas to my syndrome. it makes alot of sense to me, but then again i dont know much.  but i dont see how or why it wouldnt work.  what do you think?  i want to know honestly if i just sound like an idiot before i present my findings to the doctor
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thanks.  all of this is just so confusing and frustrating to me.
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Avatar universal
Return to PamNYC's post of 2/13/06n and the response of bluesgrlIN.  
They discuss your subject matter; perhaps contact them to find out who they saw and if they have any suggestions for you.
I googled "ovarian remnant tissue"; there are articles (including the one I just referred you to on this site).
Good luck in your search.
Peace.
dian
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blues that would be so nice!  i would appriciate anything you have to offer me!  i desperate.  my email is  ***@****
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thank you for you input and advise.  i have been searching for someone who specializes in it but cant even find a doctor who believes it exists. the doctor who diagnosed me is now 900 miles away.  there have been a few cases in which my remnat was actual size shape and function as a "normal" ovary and another where i had two on one side and 1 on the other also resembling normal ovary
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117289 tn?1391712825
The condition does exits and you will find that there are alot of women here who have ORS.  Dawn (bluesgirlIN) is a prime example and hopefully will post soon.  You will find plenty of support here and also some advise as to how to procede.  You are in my thoughts and prayers.  Godspeed
~Tascha
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Avatar universal
The condition is simply so rare that it is almost 'controversial.'   A true "ovary" does not develop from the remants left in the abdomen; it is more like a small mass that is functioning or partially functioning as an ovary,  so it can even be difficult for doctors to locate the remnant for removal of it.   Worse still, I asked  about it, and was told that had the initial surgeries been handled properly then the condition should not exist. The process of bagging the ovary before removing it traps ovarian cells instead of spilling them into the abdomen.  

Have you searched the internet for the location of a specialist in this field?  Are there any specialists?
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