ovarian remnant syndrome

[dstap]

I just had surgery and they found ovary tissue in a cyst the size of a grapefriut. I had a total hysto 14 months ago I had damage to my bowels, colon and bladder also. I am very surprised to hear of ovarian remnant syndrome. I had been told by the doc which did the hysto I should not have any pain and then went on to an onco. gyn doc to find out all of this . One of my biggest questions is ... is this neglect or somethingthat happens often?? any words of wisdom?? I am 2 weeks post op and I have been on Femara to stop all estrogen for 8 months. I stiil feel the right side pain I had felt pre surgery??

[A Rebel Spirit]

It is my understanding that it is often difficult for the surgeon to get all of the ovarian tissue during a hysterectomy. I do not believe your condition is the result of negligence, but something that happens often. Hope this is some consolation.

[nyc lady]

I am really very confused.  You had your surgery 2 weeks ago and now they are already saying that you have ORS?  First, how do they know for certain that the "mass" they are seeing is of ovarian tissue?  Did they do a biopsy to test the tissue?  At 3.5 years out from surgery I developed what the doctors believe is an ovarian cyst and they believe that I have Ovarian Remnant Syndrome because of the cyst and my FSH level.  Since I have had 2 gynocolgical surgeries, a third carries it's own risks not worth venturing into right now.  I have been told by both my GYN/ONC and GYN that ORS cannot be diagnosised until they are certain that the tissue is of ovarian nature.

Now at 2 weeks out, a mass could be numerous different things.

ORS usually happens when someone has endo, or lots of scar tissue from a previous surgery.  I had my first surgery in 2000, and besides a RSO, they removed cysts from my left ovary and tube.  2004 when the masses on the left ovary changed, I went for a hysterectomy LSO....there was a lot of scar tissue from my first surgery, my left ovary was actually adhered to the scar tissue.  No matter who does the surgery or how carefully they believe they have removed everything, a small cell can be left behind and develop into functioning remnants that can produce estrogen and cysts.

There seems to be a lot of info missing from what the doctor has told you.  It is not easy to find info on the internet, as this syndrome is considered rare.

Good luck....and if there are any questions, you have, please ask, someone on this board, will be able to help you out.

[dstap]

They did biospy my cyst and it was full of ovarian tissue, my doc said this was 1 of the things that was going on. I did have severe ENDO prior to my Hysto 14 months ago I also had A partial Hysto 10 years due to ENDO. My current Doc at my post op visit said this could continue to happen again since I was on Femara which is to stop all estrogen and I still continued to grow a cyst. I had never heard about ORS until recently. My doc said only time will tell If it will happen again. as you said it is very hard to find out about this I just stumbled on to this site by accident. But I would love to find out more about ORS.  thanks for your help. Delinda

[nyc lady]

There are 2 other women that used to post on this board and it is also believed that they have ORS...they aren't around as much anymore.  Unfortunately, the data doesn't exist.  I have read that it can happen over and over, if there is any ovarian tissue left behind.

Good luck, if you find out any info, please come back and share with us.

[dstap]

I do have a question for you though DO you hurt often?? I have been recovering but I am 3 weeks post op and up all night in pain still, It feels like the same spots as before?? My breast is tender again and my hair seems to fall out when I feel this way I wonder if it is stress or hormones??  I just want to be better and it does not seem to be the case and that is very upsetting.  My doc said we know that I did it once and there is nothing to stop it from happening again, because after my full Hysto at my 6 week check-up I felt worse than I did at my 2 week check up to remove the staples. so it started growing that fast after removing Endo then.

[nyc lady]

At this point I am not in any pain and my cyst was found because I was bleeding, and after a US they found the cyst.  I know that Fungirl has had pain and so has BluesGirls.....I will try to contact them to post to you.  I am not certain if they are away for the weekend or not, but, I will get them to post!!!!  Sit tight I'll find people for you to compare symptoms with.

[dstap]

that sounds Great I am thankful for any info I can get!!! I have not had any bleeding except right after surgery. But I do live in alot of pain daily. I also have IC a bladder disease which is pretty painful but I can mostly maintain it with diet.

[dstap]

WOW!!  I agree we are dealing with a lot of the same issues. I also have a lot of bowel, bladder and kidney problems.I have  dealt when Endo for over 14 plus years, I average a kidney stone about every 1-2 years large enough for ER visits or surgery, I have Interstitial Cystitis and IBS. So when I hurt sometimes it is very hard to pin piont where it is coming from. But I do know I have told the docs this past year I felt like I was feeling Endo pain, Ovarian pain and my doc said it was impossible. I of cousre ended up also at a Onco/Gyn doc and he BELIVED me. Do you know how it feels to tell a doc over and over again you hurt and them say "you cant"??
Anyway I do not have an appt. untill Feb again so I wonder how long I can take it before I call my Doc.  I do NOT just want pain meds but I do want to sleep at night and I do want to think of other things besides Pain all day long. I know you can understand!  I lie in bed at night and twist and turn trying to find that spot that wont hurt as much.
I am also very interrested in knowing my hormone levels now since surgery. I need to get my post op reports from my doc but they are a 2 hour drive from me and I have to sign for them so I will wait until I see him again.  
I do apperciate your time and would be very thankful for any thing you can think of to help me.  Any proactive things I can DO!!  Again Thanks Delinda

[dstap]

PS have you heard or used Femara?? I stops estrogen froth in the body Normally used for breast cancer but also being used to treat severe Endo?? I have been on it fo 8 months now to no help

[dstap]

PS have you heard or used Femara?? I stops estrogen froth in the body Normally used for breast cancer but also being used to treat severe Endo?? I have been on it fo 8 months now to no help

[fungirl]

I too have ORS or so they think.  I am one of the ladies that Pam was going to get to reply.  My name is Kasie, and I too have been in lots of pain despite having surgery in April.  It was not 4 weeks after my surgery adn I started to feel the exact pains that I was feeling before.  Of course, I went to my gyno and she said that it was probably just the healing process, but sent me to see the general surgeon who assisted her in my surgery.  He said that he thinks it was adhesions, but he would do an MRI on my back just to make sure I did not have a slipped disk.  That all came back fine, so they did a Hida-a-scan test to check my gallbladder.  That came back boarderline.  Then I finally got my family doctor to order a TVUS and low and behold there was a 2.5 cm mass.  The report said that they could see ovarian tissue that the mass was attached to.  This was still not good enough for teh doctors so they sent me to a radiologist specialist to see if it was something they could do radiation on.  After 2 CTscans and other tests, them made me see a urologist.  I had a surgery go bad on my first ovary removal and the doctor tore my urter tube from teh baldder.  The radiologist was definat that it was something to do with that.  After having a cystogram done, it proved that it was NOT my bladder.  Then the radiologist said that she could not help me.  I finally found a gyn/onc that insurance would finally let me see.  She is the one who looked at all of the pictures, read the reports, and actually listened to what I had to say.  She felt the mass and told me that since my ovaries were attached to my colon, bowels, and bladder,that a could get an ovarian cyst close to any of these organs (my first doctor did a lapscope instead of doing a laparotomy to remove the 12 cm cyst and ovary).  When I had another tvus done, it was gone.  I know the exact day that it ruptured.  I went for about a month wiht no pain.  Then one day, it all starts up again.  I have back pain off and on all day long, I have cramps, pain in my hips and down my legs, pain in the vigana.  I did have anoter tvus done and it did not show anything, but I had an FSH test done also.  It came back at 20.83 which is very good for not having any ovaries.  I should be in menopause (FAH level should be in the 50's.  Is that right Pam?)  I have not had to be on amy hormones since my surgery in April.  Since no mass was see on the tvus, my gyn/onc believes that I am producing enough estrogen to kick start my endo back up.  She said when they did my hysteroectomy 5 years ago that it would have been imposible to get all of the microscopic pieces.  Now with my body producing estrogen it is starting to grow again.  I have an appointment to see her again on the 4th of Jan.  I will let you know what I find out.  IT seems to me like you are going through the exact same thing.  Maybe your endo is starting back up.  Kasie

[fungirl]

Is Femara a shot or a pill or what?  I have never heard of it.  I do know that at one time they wanted to put me on Lupron shots and I refused.  First of all, my insurance does not pay for it and it cost about 350 for the first shot and 550 for the next 3 to 6.  It also has very bad side affects.  If I have my choice, i am going to have her cut me open and clean all of the endo and adhesions out.  I go and see her on Thursday.  I am really anxious to see what she has to say.  I will let you know when I find out something.  HAPPY NEW YEAR!!  Kasie

[dstap]

Femara is a Pill, my doc says in Canada they are already using it for ENDO but US is not ready yet but maybe soon .  he says it has great respone on most patients but as you can tell some of us are not regular patients HA. I do hope you get your surgery too! nothing seems better than to have it all cleaned out! I hope you also have a great Mew Year and Pain free.

[nyc lady]

Hey, Kasie, thanks for stopping by....I knew that you could offer some compassion if nothing else!!!

Hope you had a great holiday....

Pam

[EVD]

My story is so similar.  In October 2004 I had an exploratory laparotomy to remove a large ovarian cyst on the left side.  It turned out to be a 15cm endometrioma, and I had the ovary and tube removed.

Now, 2 years later I have a 4.5cm cyst on the left side.  I've been having pain on the left side toward my hip and going down my left leg.  I thought it was some type of arthritis because it was so bad, mostly when I get up from sitting for a long time or getting out of the car.  When my gyn asked me if I was in pain, I still didn't associate that pain with a cyst.

In 2 weeks I am going back to the Dr. for a CA125 and discuss the options.  I am seriously considering a hysterectomy to be finished with all of this.  My Dr mentioned a possible laporotomy, but I am worried about scar tissue.  I had 2 previous c-sections 2 years apart with alot of scar tissue after the first one.  

Now I hear some of you had hysterectomies and still have endo/cysts.  That is so not fair!

Thanks for listening.  Good luck and I hope you find some relief!

[dstap]

Hey I just got out of the hospital again I had a small bowel obstrucstion {sp?} the doc said it was from all the scar tissue from all the pelvic surgeries and my recent surgery..  I was wondering how your last drs appt went?? I just got home last night so I am not feeling well yet, so I'll check in later.

[maddog233]

I have just returned from having an tvus and have found out that not only has my right ovary grown back with a large cyst on it, but they have also found my left has grown back as well.  I am finding it hard to believe all this that I am seeing but I am happy to see that I am not the only one.  Since 1999 when I had my hysterectomy for cervical cancer, I have had 8 major surgeries to remove ovarian remnants and cysts from the right adnexia.  Each time they say they got it all and each time it grows back, it took 2 years this last time.  My last surgery was major because the ovary had attached itself to my ureter on the right side and they had to remove part of it and replace my bladder so it would reach.  My gynocologist is now telling me that she will not do another surgery on me because of all the scar tissue and how hard it was to remove the last mass.  That was before we knew there was one on the left.  I am so very lost now and dont know what is going to happen.  My family doctor is saying that no matter what it needs to be removed, contradictory to what the gyno is thinking.  She said the only way she would touch it is if it is cancer or if it starts to effect my ureter again.  2 months ago I had severe kidney infection and kidney stones, I am thinking now it is because of the ovary thing growing back.  I am just at a loss and dont know what to think anymore.  If there are so many people having this issue why dont they find a way to deal with it.  Beyond me,  but now I have to deal with the daily pain that seems to be the norm for all that have the same symptoms.  I am looking for all the information I can find on this subject now, so when I go back to the gyno I can ask the right questions.  I am wondering why lazer or chemo therapy would not kill the cells of the remaining ovary.  Has anyone had this done?  Does it work? I dont understand why they cant just kills the cells that are remaining... I am feeling at such a loss and I am getting really sick and tired of doctors telling me that the pain is in my head.  Acting like I asked for all this to happen to me.  I have no clue how to deal with the mantal anguish of it all while still trying to deal day to day with the pain.  Anyone feeling the same way with some helpful hints?

[s13]

I just came across this site, while seeking medical info.; I felt inclined to share my knowledge...There is no such possibility of ovaries growing back, following their removal.  The persons being told this info. need to follow up w/ 2nd opinions, by competent doctors.  I have had stage III Endo since I was 16 yrs. old (I am now 30); I have undergone 3 laparoscopies, a total abdominal hysterectomy, a bilateral-salpingo oophorectomy, & a laparotomy in the past 14 yrs.  I am preparing for my 2nd laparotomy (along w/ several other procedures prior to) within the next 3 wks.  I've heard all the myths about pregnancy & removal of reproductive organs curing Endo, along with lowering risks (or even the possibility)of Ovarian Cancer.  There is way too much obsolete info. in the public eye view nowadays.  I've done aggressive research, aside from my general nursing studies (RN hopeful), to find a significant relation between Ovarian Cancer & Endo.  Yes, I too have been to a GYNOncologist...after a CT presented with abdominal fluid, a pelvic mass/tumor, & a lg. complex cyst...I was recommended to see a GI specialist for possible Diverticulitis in my colon, a Reproductive Endocrinologist to harvest eggs from an ovary that miraculously grew back; I was only sent there to begin with (by my OBGYN) for a needle biopsy & aspiration of abdominal fluid.  All of these symptoms occurred AFTER surgical menopause.  I am still seeking answers for my problems, but am VERY fortunate to have an amazing doctor who listens to my symptoms.  He is current with all the new up & coming studies & info.  I pre order texts before the publish date, just to have new info.  The most important thing I've learned from my experience is this - LISTEN TO YOUR BODY, don't give up, & you must be aggressive w/ doctors.  I've been with my current OB for over 10 yrs. & he speaks frankly with me.  I've been told of the strong possibility of Ovarian Cancer, most likely stage III due to the peritineal fluid, derived from Ovarian Remnant Syndrome.  Wake up & listen!!!!!!!!!!  Just because a doctor says so, certainly doesn't mean it is so!  I'm here, I'm confident & ready to fight my chronic health problems...I'm also here for anyone who can handle assertive, critical thinking.  Don't sit around & wait for the doctors...ignorance is not bliss...EDUCATION & AWARENESS IS KEY TO FIGHTING THE BATTLE!

[dstap]

Once again I so full of confusion, I know my body and I know that what I feel. I feel as I am at the mercy of DOCS who can only SEND ME FROM ONE TO ANOTHER.. there are SO many conflicting reports I was told you can not have Edno after a hysto than 1 year later OH, yes you can. I was told ovaries can not return then 1 year later oh, yes THEY can. So here i sit with all of the same symptoms as I have had for years!! I have seen every specialist possible, and still I have the same pain. I am up at night with this pain it interfers with every part of my life. I want to stay in bed a lot and I want meds that dont make me sick and to take the pain away!!! what NOW?? WHERE DO I GO FOR HELP???????

[phch]

I feel so confused. I had surgery june of 2007 right ovary removed because of a large cyst, I had internal bleeding and spent 8 days in the hospital. I was off work for 6 weeks, by august I was feeling bad again but thought it was due to gioing back to work. pain in my right wont go away, I have pain everyday. I had a tvus and also ct, i have been told both times there is nothing there. I have pain most day, on my right side where the ovary was removed and it seems to go down to my hip does this make sense? Recenly i have had pain on my left side. I think this could be ors but i'm not sure what to think. The two doctors i have seen both say theres nothing wrong. Do i see another doctor??

[wilmab]

it took 14 years to get a diagnosis of endometriosis   After many laparotmies to treat endo I had my left ovary removed in 2000 they told me it was the most necrotic ovary they had ever seen i never had pain on that side. then in 2001 i had another laparotomy and they found ovarian tissue on the left side had produced huge cysts, in 2002 I had a hysterectomy and removal of right ovary which was bound to pelvis and urethera this time they found the left side ovarian tissue had produced huge cysts again, they gave me low dose HRT to take home ready to take after eight weeks and warned me i would go into sudden menopause i waited nothing happend, i didn't take the HRT i returned to my appointment and told them i was glad not to have heavy painful periods but the ovarian cyst pain had come back and i felt likei was ovulating the female doctor laughed in my face and told me that was impossible but i insisted on a blood test but i never went back for my appointment because i felt so humiliated my primary care doctor while investigatin me for lupus found that my hormone levels were completely normal and referred me back to obgyn they had to do another surgery to remove ovarian remnants with huge cysts on both sides release my bowel from severe adhesions  but leaving the remnant stuck to my urethera and told me they remnants were tiny now and wouldn't function for long and gave me low doe HRT to take I waited for menopause it never came, in 2005 while being treated by rheumatologists for lupus they found huge ovarian cysts on both sides and hormone levels normal I refused surgery and have not returned to obgyn and i live with the pain and discomfort I have lost the fight in me having spent 14 years listening to doctors tell me I just had low pain threshhold and that my periods were normal then getting a diagnosis at the point when a lot of damage had been done they promised me the total hysterectomy would work after 7 rounds of  failed hormonal treatment over the years, i believed them  if you have any fight in you keep it and listen to your own body insist on an MRI to locate remnants as here in ireland they say that is the most reliable way to find them, they found five as well as what looked like a full sized ovary on left side but i refused surgery i am 41 now and trust that nature will soon shut every thing down  i hope this helps you to fight  

[CarlaAmero]

Hi,

My mom had a mass removed in January and was told last week that she has stage III ovarian cancer.  She had a full hysterectomy about 18 years ago and her ovaries were removed, so we were told it is probably a remnant from her ovaries.  She also only has 30% kidney function in her left kidney and 0% function in her right kidney, due to a mass on her right kidney that blocked the utterer.  She has been living with this function for about 5 years and has been feeling good until now.  She looks and feels great now too and has anxiety over the side effects of the chemo treatments.  My question is, since some of the chemo drugs are toxic to the kidneys, do you recommend any other type of treatment that will not affect her remaining kidney function.  She is really nervous about being on dialysis, especially if the treatments don't work.  We were shocked to hear of the stage and type of cancer as when the doctor removed the mass he said it was probably in the first stage and then we find out it is stage III and her only options are to go through chemo and probably live on dialysis for the rest of her life and there is a 50% chance the cancer will return, or don't do the chemo treatments and the cancer will 100% return within a year and they will not operate again.

We have been very discouraged and we don't know where to turn next as we want to make sure she has the BEST treatment.
Any information you can provide will be very helpful.

Thank you and I hope to hear back from you soon!!
Carla Amero

[Brownie3321]

Hello there. I'm really sorry to hear your mom and you are going through this. To the best of my knowledge, most chemo drugs do put stress on your kidneys. Have you talked to her onc about any options that would put the least amount of pressure on her kidney? There are probably some natural ways to help the kidneys flush, and I'm sure someone will be on here to let you know. You and your mom will be in my prayers. With love, Deandra

[CarlaAmero]

Hi,
Thank you so much for your prayers, we definitely need them.  We are going to the chemo doctor today to see what he has to say, so keep us in your prayers that there is another option for us.  My mom is my BEST friend and I don't know what I would do without her.  Also, if you see anything or know of anything that can help or give us direction I would appreciate it.  I have done so much research I don't know where else to turn.
Thank you again
Carla