ORS any new information??

[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.  Which concerns me because now I am expected to live with the pain and it seems unfair.  Anyone know of anything that can be done. The cyst I have on the right ovary is 6 cm it has grown over the last 2 months from the cs when it was 5x5. But now I have the left ot contend with... I feel so lost and confused.

[runfast]

My 3rd surgery they had to remove my ureters on both sides because of ORS and they used some of my bladder to rebuild the ureters. I swear our case is the same. And yes I'm very tired of the Docs telling me to live with it. They aren't the ones awake at night in pain. Now when I have a new symptom I just keep it to myself. I don't want to bother my family with more ****

Kerri
  PS  
I'm willing to talk. I really thought I was the only stange one


Kerri_draper***@****

[EVD]

Thank you, runfast.  When I check my insurance HMO under specialists, I see oncologists, but no specific gyn/oncologist.

When I had my last surgery, the gyn/onc was brought in by my gyn at my request, but I don't think he is in my HMO.

Does anyone else feel bad about having reservations about the original dr doing the ORS surgery.  I do, I know it sounds crazy.

I have a certain loyalty to my dr, but like I said, I'm not sure that she has come across this before.  She sounded surprised after the radiologist report, when we spoke on the phone.

I'm going to ask my husband to bring up the subject.  She mentioned laparospic surgery this time, at least an attempt.

I'm just really nervous about scar tissue and adhesions.

I thought I would ask if I should just have a total hyst, since I still have my rt ovary, uterus and whatever they find on the left side.  I am perimenopausal, have heavy bleeding, am almost 48yo. with a history of endo.

It seems that many of you have already had hysterectomies and still have ovarian remnants, so maybe it is not a solution.  I just thought the estrogen is feeding my endo.

I'll find out on Tuesday. My dr wants to do some further diagnostic tests?  Whatever that means.

Best Wishes,
liz

[maddog233]

oh  I am seeing a obgy/onc  they re supposed to be one of the top 10 facilities in the US   University of Michigan Hospital is where I go.  The only other thing I can think of is contacting the Mayo Clinic.  I am just having a hard time trusting any doctors anymore.  What is funny is at the hospital at my last visit, because it is a learning hospital, they sent in interns to ask me questions. Making me start from the beggining. Which to me makes me think it would only confuse them because it is such a long story I cant possibly cover it all. But I humored them, answered all the questions, let them all examine me. And once again I was told how rare this is and non of them had heard of it before. One even told me ovaries cant grow back... I showed her.  Rare,  I dont think so

It makes me laugh, which is good at times, but frustrating.

ANYONE WANNA BE A GUINEA PIG....not me

Laura

[maddog233]

Dont you just get sick of the doctors looking at you like your nuts for feeling the pain and not being able to pinpoint where it is comming from.  Or for feeling so many different things.  When I go in I feel like I am blowing his mind with all the different things I feel.  Pain in the hips,  pain in the lags , tingleing in the feet, pain in the left side  no wait today it is in the right,  it pulls from side to side because of the scar tissue.  Then the dr has the gaul to ask you if you are bringing it on yourself by thinking about it.  One dr actually told me that it was all in my head and I needed to see a physc dr before he would proceed. Only for me to have a surgery 6 months later to find out it was connected to my ureter and making my kidney not function properly, which could have shut down completely. Turned into the most major surgery I have had yet this far. They had to call in several different specialists like a urologist to remove part of the ureter and move the bladder to fit.  I just looked at that dr when I woke up and asked if it was still in my head. OH !!! then you have family members that mean no harm but act like HERE WE GO AGAIN, I did not ask for this to happen, and wouldnt wish it upon anyone.  But it is real and I hate my feelings being dismissed, thatis partly why I feel so alone.  Its not like a broken bone that they can see. So because they cant SEE IT then it must not be real. Again making me feel like it is in my head.  What I dont understand is if there are so many women with this, and we here on this site prove we are here, why cant they find a way to kill the cells to make them not grow. I accpet you cant get it all, but why cant they lazer the cells and kill them, or chemo to kill the cells.  This is just driving me nuts.  And every dr you talk to has a different oppion. So how are you supposed to get a second opinion?? you could go to 3 different drs and they would all say 3 different things.  Which makes you a dr when you have to make a educated choice in which one to believe in.  There just seems to me that there should be an easier way to deal with this.  And also if we keep growing fully functional ovaries then why cant we dontate them to women who cant grow them at all. Not like we wont grow it back.

Thank you all for responding   WE ALL NEED TO STICK TOGETHER
and be more informed through each others horror stories

Laura
PS I would not object to talkin in person with any of you to help each other get things off our chests.  My phone number is available if you ask. I have free long distance throughout the whold US.  Just an offer :)

[runfast]

I go to a gyn oncologist. They are better at ors surgery

[EVD]

I am another victim.  I had my left ovary removed 2 yrs ago because of a 15cm endometrioma. (chocolate cyst)  I have had pain for the last 6 months near my left hip and travelling down my leg.

During an u/s 2 months ago, the technician said are you sure you don't have an ovary on the left side? Like I was crazy.

Well, I'm going to see my gyn on Tuesday. There is a new cyst (4.5cm) She wants to do some further tests and discuss options.  I had 2 c-sections and a laparotomy thru the same scar.

I'm nervous about scar tissue and adhesions, also.  But the pain is there. Something will have to be done.

I don't know how many of these surgeries my dr has performed.

I'm bringing my husband to my appt as a second pair of ears.

I've been trying to research this ORS, and there is not much information out there.  Do any of you go to a specialist for this?

Thanks,
I know how you feel
liz

[fungirl]

Hi Ladies, I too am in the same boat as all of you.  I had to have a hyster at the age of 25 due to heavy bleeding and a little endo.  Then, I had a cyst on the left ovary removed (left ovary in), 6 months later he removed my left ovary along with another 12cm cyst (he cut my urter tube and did not know it, so I almost died form paratanitis.  Had to have bladder and urter repaired).  A year later, I had my right ovary and a 9cm cyst removed.  About 4 weeks later, I started having the same pain I was having before.  Of course, my gyno (different on that the first three surgeries) told me that it was just adhesions and maybe I was depressed (Oh Please, they use that excuse all of the time), so she put me on anti depressents.  2 weeks later, I was still having pain, so she sent me to see the general surgeon who assisted her in the surgery.  He thought that since I have had so many surgeries, I was just taking longer to heal.  He did say that he thougt some of my pain was due to my gallbladder.  I had a hida scan done and it came back boarderline.  He told me to come back in 2 weeks if I was still having pain.  He also said maybe I have a buldging disk in my back so he ordered and MRI.  Did show a budging disk, but none of my symptoms that go along with that so  my pcp gave in and had me get a tvus.  Low and behold, there was what appeared to be an ovarian mass and a part of an ovary.  He sent me to see a radiologist to see if it was something she could do radiation on?????  Needless to say, I went throgh 3 ct-scans and more tvus.  Finally she said that she could not do anything.  Now, I am seeing a gyn/onc who is great.  She said that not only does she think that I have remnants on the left side, but on the right as well.  The cyst that was showing ruptured in August.  Now, I am having pain again.  She aslo does not want to do surgery, so she is trying to get me on the pill.  I go back in March to see if it is working.  I would suggest that you get a FSH level done and an estrogen level.  My gyn/onc is 100% sure that I am producing normal amount of estrogen as I have no menopausal symptoms and am not on hormones.  I too can not find much info, but maybe we can all put our heads together and give all the info we have.  Please keep us posted on what you all find our.  Kasie

[runfast]

OMG  My story is exactly the same as yours. From cervical cancer to multiple surgeries to remove ovaries with large cysts. My dr also does not want to operate on me. I now have a 7cm mixed cyst growing on right side. WOW I thought I was the only strange case.

[nyc lady]

Wow, 8 surgeries....that is a lot.

I know that knowing we are not alone makes a huge difference.  The doctor calls me his "anomially" so I know how you feel.  The hardest thing is not really being to get answers, like will it happen again, what can we do to prevent it from happening...and in my case, will it become cancerous this time, next time????  Personally, I want it out, not that I want to go thru another surgery, but, I feel like I am sitting on a time bomb.

Funny thing is, is that no matter what, the thought of the cyst and the ORS is always in the back of mind.....I can't get it out of my head....every pain I feel I think it is the cyst or another one or it has grown.

I have done all the research that I could, there just isn't alot of info out there...very frustrating.

Pam

[maddog233]

Thank you for responding it is great comfort to know that others are going through the same thing as I am.  I did not tell the whole story at first as to not sound like a freak, which is what I am told all the time. Mine started in 199 with cervical cancer, I had a radical hysterectomy but they left the ovaries, as to not push me into meno early. 6 months later they had to go in for the right ovary because of cysts, which I have had ploycystic ovarian desease all my life so why did they leave them, anyway they went in an removed it, 1 year later they went in for the other ovary and each year after this I have had a surgery for removal of the remnants, a total of 8 surgeries in all cutting from hip to hip each time, the last time they went from just above the belly button down to the pubic bone. this was 2 years ago and now they are saying I have the right ovary remnant back with a large cyst on it which is leading me to the present which I already posted.  I am eager to learn as much as I can on this and possibly help anyone else to not go through what I have went though. I am sure there is more I have forgotten it is so troubling that I try my hardest not to dwell on it all but I am remembering alot now reading these posts from everyone.

[nyc lady]

There are a couple of us that post here that have ORS or in my case the doctors believe it is ORS, I have not had a surgery so the tissues have not been tested.  I had my right ovary/tube removed in 2000, stage 1A OvCa, in 2004 the rest went.  In 2005 they discovered a cyst, a mass whatever you want to call it.  I am back on the wait and watch train.  Due to the history they have to watch for changes, but, they really don't want to operate because of the risks associated with surgery.  I have had 2 and they feel that the scar tissue from those surgeries will add tremendous risks.  I however am not in pain....Fungirl, should be along to share her story, she does experience pain.

Are you seeing a GYN/ONC for the ORS? They are the experts.

Good luck and let us know how it goes!!!!

Pam