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How can this be?

I had a complete hysterectomy in 1995. I had several problems, polycystic ovaries, endomet., adhensions, tumors, The doctor recomended a complete hysterectomy, uterus, tubes both ovaries, ect...
I have been on HRT until last year, I was scared to keep taking it, and now the last year I have had pain in my lower right side. I have brought this up to my family doctor 4 different times just to be blown off. I scheduled an appt. with the doctor that did the hysterectomy to discuss this pain, and she said she thought it was just from the colonoscopy that I had had 2 years prior, and I should go see that doctor. Then she decided to do blood work to check my horome levels. They came back extremly low, which she then told me that I have not went into menopause! I had a TOTAL hysterectomy! I have had the night sweats where I would wake up drenched and have to change the sheets and my clothes, not to mention the hrt for the last 12 years. now she wants to do a ct scan. She said that it is possible that they LEFT some ovary tissue. I had a hysterectomy because she told me that I was a mess and that I did have cancer cells, I was 39 years old. What does this mean? If I had cancer cells, and they left part of my ovary, how can this be??? How can you leave PART of an ovary? I am so scared, Has anyone else had this problem? What should I do?
25 Responses
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Avatar universal
WEE?
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151462 tn?1359172276
WOW
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Avatar universal
I am always easy wheezy!
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Avatar universal
Heh..... I am also one that is interested in anything strange that I never heard of. Actually, I have always been interested in medical mysteries.

But I will say I have heard of ORS before. It is very interesting.
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151462 tn?1359172276
Easy.....I was just curious!
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Avatar universal
No I don't have it, I am interested in anything strabge that I have never heard of....its continuing education............is that ok?
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151462 tn?1359172276
Sorry I meant ORS?
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151462 tn?1359172276
Do you have OVR? Why your interest in this matter so much? Just curious.
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Avatar universal
Definition of Ovarian remnant syndrome

Ovarian remnant syndrome: Pelvic pain due to leftover ovarian tissue after removal of the ovaries and fallopian tubes. Ovarian remnant syndrome can cause cyclic pain and pressure on the vagina, rectum, bladder, and ureter. The ovarian remnants may be removable with laparoscopy. A qualified gynecologist familiar with the condition should be consulted.
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Avatar universal
OVARIAN REMNANT SYNDROME
Remnant to me would mean they left a small amount of ovary!  I guess I would be right then in my guess.........?



P.M. Magtibay, J.L. Nyholm, J.L. Hernandez, K.C. Podratz

Mayo Clinic Foundation, Rochester, MN



OBJECTIVE: To examine a cohort of 186 patients managed for ovarian remnant syndrome at Mayo Clinic from 1985 through 2003.

MATERIALS AND METHODS: Data was abstracted from the records of 186 patients with a prior history of bilateral salpingo-oophorectomy (BSO) and subsequent pathologic confirmation of residual ovarian tissue following surgical re-exploration which included excision of the pelvic-sidewall peritoneum and the vaginal apex.  A questionnaire was mailed to all patients in an attempt to secure updated information.

RESULTS:  The mean age of the cohort was 37.6 years (20 to 73 years) with a mean follow-up of 1.2 years (0.1 to 15.6 years).  Of the patients with available data, 90% (153/170) underwent oophorectomy via laparotomy, 13 (7.6%) via laparoscopy and/or 14 (8.2%) via a transvaginal approach.   The most common indication for bilateral oophorectomy was endometriosis (56.8%).   The mean number of laparotomies and laparoscopies prior to ovarian remnant surgery at Mayo Clinic was 1.4 (0 to 8) and 0.77 (0 to 10), respectively. Of the 186 patients, 105 (56.5%) presented with a pelvic mass and 89 (47.8%) had a variant of pelvic pain including dyspareunia (26.3%), dysuria (6.5%) and/or pain with defecation (5.9%).  Despite not receiving estrogen replacement therapy 70 (37%) denied symptoms of estrogen deficiency. Conversely, 77 (41.4%) were immediately place on estrogen replacement therapy following BSO.



Preoperative FSH testing was conducted in 61 (33%) patients with 19 (31.2%) demonstrating menopausal levels of >30mIU/mL. The remnant ovarian tissue was associated with a corpus luteum in 78 patients (42%) and endometriosis in 54 (29%).   The intraoperative complication rate was 9.6% including enterotomy/colotomy (5.4%), cystotomy (1.6%) and ureteral injury (1.1%). In addition, 22 (12.2%) patients required transfusion and 3 (1.6%) required a return to the operating room.



Based on abstracted clinic records and/or responses from the questionnaire 12 of 142 (8%) patients with mean surveillance of 15 months required a subsequent reexploration including 10 for persistent pelvic pain and 2 for ureteral stenosis.  In only 1 of the 12 patients subjected to reoperation was an ovarian remnant identified.  

CONCLUSIONS: In a large cohort of patient treated for ovarian remnant syndrome, endometriosis was the most common primary indicator for oophorectomy. There is modest risk of bowel, bladder, and ureteral trauma with definitive pelvic sidewall striping and apical vaginal excision in this heavily pretreated/operated population.   However, the subsequent recurrence rate is indeed minimal (90% of the patients.



Key Words:  ovarian remnant syndrome  



Disclosure – Nothing to disclose.


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Avatar universal
Ok I will have to look into this phenomenon hahahaha
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151462 tn?1359172276
Hello, Just thought I would give you both a little FYI....I had a GYN visit today, and yes I will be having another surgery in a few weeks to remove my second round of ORS. My first round was removed in November of 2006 like I previously mentioned. This is so crazy to me. I is rare for it to happen once, but even more rare to happen twice, but my doctor stated that it can happen over and over numerous times once a person has it once. Yes.....womens bodies are very strange.
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Avatar universal
Thats very interesting. Yes I would be very interested in reading about this phenomenon. I had never heard of that. My surgeon said my left ovary looked good and he couldnt see or find the right one.  Maybe it evaporated hahaha.......very weird these woman bodies.
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106886 tn?1281291572
Hi Madge, I am in kind  of the same boat as far as sitting for too long! Last week I irritated a ruptured disc that had been healing nicely...it is much better this week, but I am still not quite myself yet.

I will see if I can find a post when I get home from work tomorrow. It is not quite like the lung scenario you mentioned other than what we all know about regarding leaving an ovary or a good part of an ovary so that a woman can still product their own hormones, this rare ORS is essentially a "mistake" if you will. It is when microscopic ovarian cells get trapped in adhesions, scar tissue, or endometriosis (a type of adhesion really) and get missed more or less by the surgeon...certainly not intentionally, however. I am confused on what happens next, but as I recall, the cells do produce hormones and in fact can grow cysts that would only produce more hormones.  If one has been Dx with Ovarian cancer or there were cancer cells or even borderline cancer cells, you can imagine how difficult it is to get the news that not all of an ovary has been removed. I guess the word "remnant" says it best.

I will see what else I can find out tomorrow unless I get home too late...but, I will get back here! I always do!

Mary
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Avatar universal
Is it like what I described with the lungs? I can't sit very long yet, so I can't research now.  Its very interesting though.
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106886 tn?1281291572
I have a few friends on the Ovarian Cancer Patient to patient site who have Ovarian Remnant Syndrome (ORS). I had never heard of it either until about five years ago. If you type in a search in the little box in the upper right hand corner of this forum you will get a ton of "hits" that all contain info from other clients who have or know someone who has ORS. It is rare, that is for sure, but it is one reason I insisted on a Complete Ultrasound when I was having all of my problems last year (turned out to be a ruptured disc, but the pain was NEVER in my back and boy, I was surely suspicious of ORS).

For those who have it or had it...hoping you are feeling better...

Mary
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Avatar universal
Go into expert forum and asl the doctor.  I will watch for the answer.
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Avatar universal
The only thing I can figure is..............
When someone has a lung removed, the other lung will grow and fill up the other empty side of the chest cavity after a bit.  If they took out ovary and left a tiny bit for horone secretions, I can see where the ovary may grow back in size.....thats how I would see it could happen. Thats an educated guess.
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151462 tn?1359172276
Trust me I had three opinions!!
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Avatar universal
Something is screwy there.....I would get another oppion most definately.
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151462 tn?1359172276
Trust me they took both of them . I had the first one removed in September of 2005 and the last one removed in March of 2006. I was there I had the ovaries removed. What happens is that the remaining piece attaches onto a blood supply and begins "acting" like a ovary. My GYN Oncologist said that this is very unusual and he only sees about one to two cases a year.
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Avatar universal
Are you sure they took them in the first place?  Many times there is confusion as to what they actually did take.  I heard that first thing from my surgeon.  I have never heard of ovaries growing back.
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151462 tn?1359172276
Hello,
Wow your comment really hit home. I hate to tell you this but your story is so much like mine. I had my uterus removed in 2004 and then my ovaries removed after that on two separate occassions. I thought after my last ovary was removed in March of 2006 then I would be fairly "pain free". Needless to say that wasn't the case. I was hospitalized in September of 2006 for a very horrible bleeding ucler, and during a routine CT scan they told me that I had a huge cyst on my ovary. Stumped by this finding as my ovaries were both already removed I then contacted my GYN after my release from the hospital. After she did further ultrasounds (internal and external) it was true that during one of my surgeries for my removal of my ovaries I had such bad adhesions/scar tissue that a part of one of my ovaries was left, and therefore a cyst formed on the piece of the remaining ovary. It is very uncommon to have ovarian remnant syndrome, but it is something that actually happens. The surgeon doesn't intend to leave in part of the ovary during the surgery, but due to all the adhesions it happens. I had my "third ovary" (as I like to call it) removed in November of 2006. It was a very hard surgery for me, as I usually bounce back fairly easy from any surgery that I have ever had. I have to be honest with you though I was told that this could happen again to me, and guess what.....my "fourth ovary" is now growing and has a 3cm cyst on it at this time. I last had a ultrasound completed in November of 2007 and will have another one in a few weeks. I am 34 years old and thought that once all my "parts" were removed then my pain in my pelvic area would be gone, but I was wrong. I don't blame the doctors, but my body. I have come to terms with the fact that it is something that can be fixed, and isn't going to kill me.....thankfully.
I wish you the best of luck in your quest with this syndrome. Also a little FYI, there isn't much info on the web about this syndrome, and the info that you do find doesn't ever talk about it coming back after it is removed. Goodluck and keep me posted. Please feel free to ask me any question(s) that you may have as you may feel like you are alone in this crazy medical syndrome.
Best Wishes,
Tracy
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Avatar universal
HI Mary, yes they do leave part of ovaries, to have a small amount of hormone drip from it.  I would want to be absolutely positive as to what exactly they did.  Find out from the surgeon.  You can have pain in that area and it can most definately be intestine problem.  You need to have more tests for the doctor to know whats going on.  I would think if they thought there was any chance of cancer cells not being contained there would have been follow up treatment, so try not to worry. Let us know about the test results.
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