Ovarian Remnant System

THANK YOU!!!!  All Of you!!!  I felt that I was losing my mind until i found the thread for Ovarian Remnant System!!!!

back in 1994, I had a hysterectomy due to cervical cancer.  They left my ovaries.  On 4/7/06 I had my left ovary removed due to a hemorraghic cyst that did not heal and extreme pain.  Day surgery turned into a 3 day stay because the ovary had fused onto the Iliac artery and "other" things in that area.

At 6 weeks post op, i felt great!  Surgeon said it wasnt' cancerous and he got ALL the ovary.  I never expected to see him again.  At 8 weeks, I was doubled over and in EXTREME pain.  I managed to see him 4 days later after spending a drug induced weekend on the couch.

LOOOONG story short, he says the got ALL the ovary and it shouldn't have regenerated itself after only 9 weeks post op.  I had a cat scan and it showed fluid in the lower left quandrant.  He put me on low estrogen b/c to see if the pain would go away.  I would see him in 7 weeks.

Today at 4 weeks, I AGAIN am in pain and it's getting worse.  The birth control is NOT helping and I feel like I'm losing my mind!  Until I found this site and saw all the other women who are going through the same thing.  I still have to wait 3 weeks to see the surgeon and i'm not sure what he is going to do. As of last week, my regular gyn asked me if I was SURE they removed the ovary because there is something where it should be.  

I'm going to continue reading this site to see what you all have to say. But Thank you for showing me that I am NOT crazy!

[appasgirl]

OOps, meant to say syndrome!  oye.....

[Teresa210]

It's good seeing you in here Pam.  What happened to the Hysterectomy forum?  I finally did have a CT Scan.  I don't know if you remember but I had trouble getting in to see doctors here in Nevada afer having nearly 10 lb serous cystadenom removed and hysterectomy.  We talked about ORS and Nora jumped in and said it was highly unlikely.  On the CT scan it shows three new cysts all about 2.5 x 2.5 in size and the report references rather thick borders with haziness around them.  One looks like it is on the bowel, one looks like it is just next to the bowel.  And I can't figure out why he mentione three because he didn't note anything on the third. The one on the bowel may be why I have been having increasing troubles going.  But the other leaves me with this ORS on my mind.  I have cystic fybrosis, a cyst in my sinus, cysts on my ovaries in the past and now this.  Just wondering if I don't have them here just because now, or if it is another serous cystadenoma.  Where could I go to get some good solid information on ORS to take with me to the to an appointment I have with the gastroenterologist tomorrow so he can consider this before they just decide to jump in and explore again.  Again, it's good to see you.

[appasgirl]

HI Pam,

Thank you for writing back :-)  I am currently under the care of a GYN/ONC at Dana Farber in Boston, Dr Michael Muto (he's suppose to be 'one' of the best).  Were I had cervical cancer 11 years ago, my primary sent me there to make sure it wasn't ovarian (which it's not), nor does he think I'll "ever" get it.  The CT scan showed a 2 centimeter pocket of fluid which he thought would be normal after surgery.  Dr Muto said it was unlikely that my ovary would grow back.  It could, but it would take 6-9 months, not 6-9 weeks.

So now I have to wait until the middle of july to tell him the birth control is NOT working.  That the pain is the same if not worse since surgery.  The other options he mentioned to me were more surgery, though he doesn't want to do that, or localized/direct radiation to kill the whatever left over tissue there is.  I'm not so sure about the radiation. Have you ever heard of anyone doing that?  Has your doctor suggested doing that?

[appasgirl]

Hi Pam

Again, thank you for your response.  Ahhh, I get it about the cyst developing because of the cells....the Dr did mention that was possible too.  Since you are going to wait on surgery, does this mean you aren't in any pain?  If i wasn't in pain, then I wouldn't be pursuing this whole thing.  It's the dull ache, the sharp aches, the bloating and nauseau that I feel I dont' have to live with nor do I want to accept it either.

And on that note, it's funny that you mentioned the response from my doctor.  After finding this forum last night and gaterhing more info on the net (like  you, I found tons of stuff on cats and dogs), I called and moved my appt up to the soonest I could get in.  What I didn't know was that my regular GYN who did the V/S last week had spoken with him yesterday and told him what was going on.  That prompted Dr Muto to call me while I was calling him.  I like that response from both of my doctors :-)  Also, I get to stop the birth control since it's not working!!!  YAHOOO   Have they put you on that?  Or do you go regularly for U/S to watch the size of your cyst?

[appasgirl]

Pam, you are very lucky that you have no pain and I'll say a prayer for you that your cyst never changes. It too sounds like you are in good hands with your doctors.  They have great hospitals there in NYC!!  Hmmm, I wondering if the cyst can/is being fed by the estrogen.  I also have a lump in my breast that I'm awaiting results on.  but in doing research, there are cysts in the breasts that can form from too much estrogen.  if you think about it, why not an ovarian cyst on an itty bitty cell left behind?  The female body is a wonderous thing....I can't believe that one doctor or all doctors know everything there is to know about it(us).

Thank you Pam for putting my mind at ease and for reaching out to me.  I'll keep you in my prayers :-)

On a funny note, I just realized (read) that this site is monitored by a dr at mass general!  LOL wonder if she knows Dr Muto?  LOLOLOL

[DONNIER]

I HAVE BEEN READING SOME OF YOUR COMMENTS ON OVARIAN REMNANT SYNDROME.  I HAVE BEEN SUFFERING FROM THIS FOR ABOUT 8 YEARS NOW. I HAVE HAD ABOUT 8 SURGERIES, 30 PLUS LUPRON SHOTS AND A 2 WEEK ROUND OF RADIATION.  UNFORTUNATELY, I STILL SUFFER FROM ORS.  I AM CURRENTLY DOING PAIN MANAGEMENT AND HAVE BEEN DOING IT FOR ABOUT 3 YEARS.  I WISH I DID NOT HAVE TO TAKE MEDICATION BUT I HAVE EXHAUSTED ALL OTHER AVENUES.  THE MEDS WORK AND WITHOUT THEM I WOULD BE A GONER.  THE PAIN IS UNBEARABLE AND I AM THANKFUL THE MEDS WORK FOR ME.

[jhiraqua]

HI! I'm sitting here crying because I am so happy that I found this site. I'm 28 years old and have been through so much and things seem to be worsening. I had a partial hysterectomy in 2000 due to abdominal and pelvic pain which didn't help so I had about 4 laproscopies and ende up having 2 more major surgeries to remove both ovaries. I thought that that would fix my problems but lo and behold the pain returned. Since then I've had to be hospitalized about 6 times for testing and during one of these stays they found that I had a mass in my pelvis. I had another major surgery in which they removed scar tissue as well as the mass. I also have ascites which no one is able to explain. They mass turned out to be a cyst which was odd considering I had no overies. Within 6 months I developed another one which they removed with more scar tissue. I've been in so much pain and have had to endure the looks from doctors and other medical proffessionals that I could tell believed that I was over exaggerating. One doctor who did a laproscopy and removed a cyst had come to my room a few days later and asked me how I was feeling,I told him I was still in pain and he told me that I was lying and that I need to go home and stop taking the pain meds I was obviously addicted to. I was furious, I know how I feel and the pain meds are the only thing keeping me from killing myself. I have been doing pain management for 2 years now at another doctors referral and I was very offended that he was accusing me of bieng a junkie. I am used to bieng very independant,working and goung to college and hate that my life has come to a standstill because of this. I can't work because of the pain and all the surgeries that I require to remove these cyst. About 2 months ago I went to the emergency room and had a ultrasound due to bleeding and pain. The doctor on call came to my room with the results and stated that it was my overies causing the pain. I told her I didn't have ovaries and those 2 masses had to be cysts. She called me a liar and said that the tech said they were definently ovaries. I was mad and ended up cursing her out and telling her to read my very thick file from where I had been in that very hospital countless times before. She came back later apologizing but stated there was nothing they could do and I needed to follow up with my doctor which I did. He does not want to do another surgery right now so I'm currently recieving Lupron injections which are not working. I find out tommorrow if they have changed any and what course of action we will be taking. I just wanted to let you guys know that this site is a lifesaver and I will continue to read up on your progress and keep you posted on mine.


                                                   Deleshia

[Pugmom3]

I am new to this thread.  I had surgery for ORS in 2002; I had a total abdominal hysterectomy and bilat salpingo-opherectomy in 2000 for bleeding fibroids.  In 2002 I ended up with a 2.5 cm ovarian cyst that pressed on the right ureter and caused a lot of pain.  Everything was benign and turned out pretty well, but I am afraid that it has recurred; I am having right lower quadrant pressure and fullness in the right flank area.  My question is....is it common for ORS to REcur after it is removed?  I know there must be a bunch of adhesions by now.  Is it possible to get ovarian cancer after having oopherectomy?  THanks for the input.

[SherryMarie]

To the gal who is being treated by Dr. Muto...you are so fortunate to have Mike Muto as your doctor. In our family we call him the Wonder Doc. He saved my daughter's life. She was diagnosed with an extremely rare and aggressive type of cancer when she was 18 and was given a very dismal prognosis. We live near Chicago but were more than willing to make the many trips to Boston for her medical care. It's now been eight years, she's had a few different types of chemo, the lifetime maximum of radiation and too many surgeries to remember but she is now cancer free. She has been in remisssion for a few years and is working full time as a store manager while attending college in hopes of becoming an English teacher. All possible thanks to Dr. Muto! We love the man, he is kindly, understanding, reasonable, totally honest, extremely intelligent, diligent, and always puts his patients needs first. There were a lot of stress filled moments but Mike always helped us through the physical and emotional difficulties.
Sadly for all my local home town doctors, Mike Muto is now the standard that they all must measure up to. Brigham & Women's, DFCI and Dr. Muto are the true Dream Team.
I did not notice if you live in the Boston area, if not, make sure you get in touch with the Hospitality Program for your housing needs.

[frustrated in illinois]

I to am a suffer of ORS and have had three surg. removing ovarian rem. and on the first surg. the ovarian rem produced and egg with a cyst on it. Can you believe that. The last surg that I had was done by an oncologist in Madison WI. He removed two masses along with part of my floup. tube that was left behind from the past two surg. His approach was to cut off the blood supply going to the masses in hopes that they would not return. He cut me straight down the belly from belly button to groin and removed large portions of the blood vessels feeding to the masses and then removed the masses. I am really hoping that this has worked I had the surg in Jan 07 and am now starting to feel pain in the right lower quad again.......I pray it is going to go away....it has been about a week now and it is not const. but depend on how I sit or move it can sure jolt me upright!

[amy in nebraska]

I also have ORS and am surprised to find that I am not alone.  I have had 23 surgeries in the last 12 years because of chronic cysts and pain.  After a hysterectomy at age 27 and another surgery a year later to remove the only remaining ovary, I found myself in the hospital again with a large mass on my right side.  My GYN removed the mass and said that it was non invasive, but malignant and they were sure it was a fluke and would never happen again.  Fast forward just three weeks post op and the mass recurred!  I was taken into surgery yet again and opened up from one hip to another.  The mass was again found to be non invasive and malignant so I went through some localized radiation and was told that it was not likely to come back.  I am now two years past that but am again beginning to feel pain.  I hope that it is just scar tissue, but we'll see.  It's great to find that I am not the only one.

amy in nebraska

[ronettac]

i am new to the sight becausing i felt i needed to find some support and help  somewhere i feel defeated and frustrated . it is early morning and the pain from my 4th ovarian remnant has awaken me. i have just found out this week that after a year + of lupron its that the remnant is not only here but bigger than ever this was found out while trying to find out about what we thouhgt was a very painful UTI that seemed to br resisitant to antibiotics so i was sent to a uregyne and he found the 4 ovar rem was back. i asked my other gyne about radiation the last time i had this and he said that he did not have enough info and experience to feel comfortable to do that and instead assure me that he could remove it surgically with the success that the otheer doctors did not. he did not even believe me when i told him it was back so he sent for sonogram and bloodwork for the third. so here i go again wondering if i shouldnt push for these doctors to do radiation because all the other treatments arent working or maybe i should just be looking for new docs. i feel better to know that this so much more common that i ever knew. i just wish we weren't all at this same party:-)

[angel630]

A related discussion, I DONT UNDERSTAND was started.

[Ibepsgrl]

OMG I am currently sitting in the hospital for the third time since Oct.  I had my ovaries removed in Oct. And had another ovarian tissue cyst the day after Xmas which was by my kidney.  I am now bac three weeks later with the pain and bloating and with completely stumped docs!  I will keep following up on this site because I am about to lose my mind.  Thank you so much