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How many women experiencing ORS had part of their cervix left in tact after their hysterectomy?
I have ORS, confirmed and surgery scheduled for July. My hysterectomy was in March of 2007. My surgeon left part of my cervix in. I did not ask for this. I am wondering if there is a link between the "cervical stump" and the proliferation of the apparently common ovarian remnants and subsequent cysts which grow on them.
This discussion is related to Ovarian Cancer and Ovarian Remnant Syndrome.
This discussion is related to Ovarian Cancer and Ovarian Remnant Syndrome.
My hysterectomy took 2 doctors 4 ½ hours because the scar tissue was so bad this was done in 2006. When doing it they had to rebuild my bladder and before that I had no problems with it. Then Nov. 2007 I started hurting really bad they found two cystic and drain one of them. Also Nov 07 I have now had to have a bladder sling put in.
About 2 weeks later I had to have the other cystic drained.
Then in Jan they did the first of my surgery to remove the ovary left. That last about 4 weeks before I was back in lots of pain. For a month the doc keep trying to figure out what to do and finally sent me to another town to have surgery again. 2 weeks after the last operation I ended up in the ER with another cyst and have ovaries back on both sides again. That cystic got to be about the size of a football and then it busted. This is a lot of pain.
I am at the oncologist now because the new doctor thinks that I need to have major surgery this time. They are going to try the lopron shots for 3 months if that don’t work; they are going to give me fertility drugs so that I can form as many cysts as possible and then operate again.
I am also wonder if I have a law suit on my hands because the original doc knew how bad the scar tissue was before he did the first surgery for this and knew that their was almost know way to get everything
I am at the end of my rope with the whole thing because I stay in pain can't work and this has been going on for the whole year.
About 2 weeks later I had to have the other cystic drained.
Then in Jan they did the first of my surgery to remove the ovary left. That last about 4 weeks before I was back in lots of pain. For a month the doc keep trying to figure out what to do and finally sent me to another town to have surgery again. 2 weeks after the last operation I ended up in the ER with another cyst and have ovaries back on both sides again. That cystic got to be about the size of a football and then it busted. This is a lot of pain.
I am at the oncologist now because the new doctor thinks that I need to have major surgery this time. They are going to try the lopron shots for 3 months if that don’t work; they are going to give me fertility drugs so that I can form as many cysts as possible and then operate again.
I am also wonder if I have a law suit on my hands because the original doc knew how bad the scar tissue was before he did the first surgery for this and knew that their was almost know way to get everything
I am at the end of my rope with the whole thing because I stay in pain can't work and this has been going on for the whole year.
I guess that i should back up a bit... I had a TAH in Aug 06 and have been on HRT since. I haven't really had any problems until now. I started having a strong pulling sensation in my right side that pulls into my back "kidney area" and pain when using the bathroom!!! I also have really bad issues with dense tissue and cyst's in my breast now,,, my gyn says that the breast problems are hormone related. I have had an MRI which showed a 2cm cystic formation and now my gyn has done a vaginal ultrasound and confirmed that there is a cyst along with something that looks like an ovary,, he then explained to me that my body is trying to reproduce an ovary from a remain after the surgery....does any body know how large the cysts can become???? And can it turn into cancer??? Thanks
I have also come to find out that i have ORS!!!! I was also blown out of the water here in germany!!!! My doc has said to wait 4 three months then he would check to see if the cyst has grown or are things pretty much the same...I must add, that i am the first one his practice that has ever had this!!! Is there anything I can do for my pulling and discomfort in the mean time??? Thanks
You have been super helpful nyc lady! thanks so much.
You sem very knowledgable in this area so I hoped you might explain something for me.
My new doctor ordered me off my HRT for two weeks to get an FSH level, to confirm the remnant. I understand that part. He also ordered a scan to check the size of the remnant about 2 weeks before the surgery. He said that if it is big enough to see and be removed during surgery, he will take no action, simply proceed with the surgery. However, if it is not big enough, he is going to give me a drug to increase it in size. that sounds scary to me. He said it would make it easier to locate and remove if it is bigger. What kind of drug would do this and what other effects might it have?
You sem very knowledgable in this area so I hoped you might explain something for me.
My new doctor ordered me off my HRT for two weeks to get an FSH level, to confirm the remnant. I understand that part. He also ordered a scan to check the size of the remnant about 2 weeks before the surgery. He said that if it is big enough to see and be removed during surgery, he will take no action, simply proceed with the surgery. However, if it is not big enough, he is going to give me a drug to increase it in size. that sounds scary to me. He said it would make it easier to locate and remove if it is bigger. What kind of drug would do this and what other effects might it have?
the surgeon I am going to is Arnold Advincula of the university of michigan. I saw him for the first time in February and I was blown away by his intelligence and familiarity with my issues. I have 100% confidence in him.
The thing with my saying it is "common" is that - like you said - they only find the remnants when there is a problem, I am being told it is common in my case. I hear the word common a lot and so, being human, I believe that it should be better understood by the doctors. If my first surgeon, who was an ob/gyn, FACOG, had been more familiar with this, it could have ended a long time ago, like closer to the time I spent the whole day in the emergency room with vaginal bleeding post-hysterectomy. That was SCARY! then to be told, "I'm not worried about the bleeding, 5 to 7% of women who have hysterectomies have bleeding" was like a slap to my face.
The doctors agree that bleeding can result if too much cervix is left in, meaning a bit of the uterus. The funny thing is I had not had regular periods ever in my life before the hysterectomy. This whole thing started with trying ot find out why I had been amenhoreic for more than two years. Now, after I have had my female parts removed, I begin having regular periods. This blows my mind!
The thing with my saying it is "common" is that - like you said - they only find the remnants when there is a problem, I am being told it is common in my case. I hear the word common a lot and so, being human, I believe that it should be better understood by the doctors. If my first surgeon, who was an ob/gyn, FACOG, had been more familiar with this, it could have ended a long time ago, like closer to the time I spent the whole day in the emergency room with vaginal bleeding post-hysterectomy. That was SCARY! then to be told, "I'm not worried about the bleeding, 5 to 7% of women who have hysterectomies have bleeding" was like a slap to my face.
The doctors agree that bleeding can result if too much cervix is left in, meaning a bit of the uterus. The funny thing is I had not had regular periods ever in my life before the hysterectomy. This whole thing started with trying ot find out why I had been amenhoreic for more than two years. Now, after I have had my female parts removed, I begin having regular periods. This blows my mind!
Sorry but I did not see the 2nd post....ORS is considered rare not common..
I don't think that the cervix has anything to do with the Ovarian Remnant....cervical cells are closely related to uterine cells, not ovarian cells. As for endo, and the fact that the ovary was adhered...again, all they have to do is leave behind just one single ovarian cell and things can happen. They say that it is rare, but, I think it is more common then not, just most people have no issues at all so once they have had a complete hysterectomy and oopherectomy so why do any kind of tests...they just find it when there are problems. There is another lady on the board, Kasie - FunGirl something is her screen name. I do not believe that she has her cervix and she has had a lot of problems with ORS.
Are you seeing a GYN/ONC....NO, I do not at all think that it is cancer related...just that these guys are the experts in gynocological issues and have 3 years additional training over OB/GYNs and they treat many benign conditions, like ORS and bad cases of endo.
Good luck and let us know how your surgery goes.
Pam
Are you seeing a GYN/ONC....NO, I do not at all think that it is cancer related...just that these guys are the experts in gynocological issues and have 3 years additional training over OB/GYNs and they treat many benign conditions, like ORS and bad cases of endo.
Good luck and let us know how your surgery goes.
Pam
One more thing...
I was quite taken aback by the lack of literature on ORS. If remnants are as common as the doctors would have one believe in a situation such as mine, then why hasen't there been more study and publishing on this?
I hope that someone out there benefits from my case in that they do not have to go through a year of suffering to prove that there is indeed something still wrong.
I was quite taken aback by the lack of literature on ORS. If remnants are as common as the doctors would have one believe in a situation such as mine, then why hasen't there been more study and publishing on this?
I hope that someone out there benefits from my case in that they do not have to go through a year of suffering to prove that there is indeed something still wrong.
Perhaps I should start from the beginning. I will keep this as brief as possible.
I had a D&C and laproscopic investigation done in November of 2006. My surgeon found severe endometriosis and dense adhesions. My right ovary was completely connected to me adenxial wall and there were multiple other connections. I had a hysterectomy and both ovaries removed in March 2007. My doctor left the endo implants assuming they would "die off" on their own. I got better for few months.
Then around july I started having period pains. I reported this to my doctor and he litterally laughted it off. Then in October I started bleeding from the vagina and rushed to the hospital. Theye did an ultrasound and found fluid above my cervix and a 4 by 3.5 cm cyst where the right ovary would have been. My doctor said the bleeding is "normal" and ordered a follow up ultrasound for December.I began having regular periods every month. I also had been suffering from debilitating migraines before, during and after my period.
In January 2008 I began treatment with a new doctor. She added prometrium to my HRT and the periods stopped. She has since performed a host of tests and found that there is a 2.5 cm ovary with a 2 cm cyst on it. There was a difference in density found in the ultrasound of the ovary/cyst. I also had a colposcopy and biopsy of my cervix. Both were healthy.
I am now scheduled for surgery at the university of michigan with the top robotic surgeon in the area. He is going to remove the cervical stump, the ovary/cyst, the adhesions and the endometriosis implants.
My question regarding the cervical stump and proliferaiton of ovarian cells and the cyst is: What told my body to attempt to recreate my ovary? My new doctors have told me that with the adhesions, ovarian remnants are common, but that my surgeon should not have left the cervix in. He should have cleaned up the mess inside that he assumed would go away on its own.
I was wondering if the cervix and the remnant were working together or communicating to my brain to regrow the missing parts. Does anyone out there who has or had ORS, confirmed, who did not have a cervical stump left in?
I had a D&C and laproscopic investigation done in November of 2006. My surgeon found severe endometriosis and dense adhesions. My right ovary was completely connected to me adenxial wall and there were multiple other connections. I had a hysterectomy and both ovaries removed in March 2007. My doctor left the endo implants assuming they would "die off" on their own. I got better for few months.
Then around july I started having period pains. I reported this to my doctor and he litterally laughted it off. Then in October I started bleeding from the vagina and rushed to the hospital. Theye did an ultrasound and found fluid above my cervix and a 4 by 3.5 cm cyst where the right ovary would have been. My doctor said the bleeding is "normal" and ordered a follow up ultrasound for December.I began having regular periods every month. I also had been suffering from debilitating migraines before, during and after my period.
In January 2008 I began treatment with a new doctor. She added prometrium to my HRT and the periods stopped. She has since performed a host of tests and found that there is a 2.5 cm ovary with a 2 cm cyst on it. There was a difference in density found in the ultrasound of the ovary/cyst. I also had a colposcopy and biopsy of my cervix. Both were healthy.
I am now scheduled for surgery at the university of michigan with the top robotic surgeon in the area. He is going to remove the cervical stump, the ovary/cyst, the adhesions and the endometriosis implants.
My question regarding the cervical stump and proliferaiton of ovarian cells and the cyst is: What told my body to attempt to recreate my ovary? My new doctors have told me that with the adhesions, ovarian remnants are common, but that my surgeon should not have left the cervix in. He should have cleaned up the mess inside that he assumed would go away on its own.
I was wondering if the cervix and the remnant were working together or communicating to my brain to regrow the missing parts. Does anyone out there who has or had ORS, confirmed, who did not have a cervical stump left in?
I have what they believe is ORS....of course there is no way of knowing for certain if that is what is causing the cyst unless they go in and actually biopsy the mass to see if it is fact of ovarian cells, but, we assume that it is. I have my cervix, which I did ask to keep....but, that is not the cause of the ORS (if that is what it is)....I had surgery in 2000 and they removed a cyst from both my ovary and tube on the left side. In 2004 when they went back in there was a lot of scar tissue, the GYN/ONC even commented to my family about the amount of scar tissue...so unfortunately because of the scar tissue the ovary adhered to the pelvic wall and leaving behind even a single ovarian cell can create ORS.
What are the doctors doing for you?
Pam
What are the doctors doing for you?
Pam
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