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Ovarian Remnant Syndrome
Okay, I've been experiencing some weird symptoms lately, reminders of when I actually had ovaries, a uterus and periods. In fact, I've started getting the same pain I used to get when I ovulated, but it's been five years since my initial surgery to remove everything. It's been suggested to me that my symptoms sound like ORS. So I guess my question is, how long does it take for ovarian remnant syndrome to develop? I would think that it would be shorter than five years. CT Scans are clear so tumors are ruled out. Any insight is greatly appreciated.
Ladies - you might get more responses, etc ,by starting a new post...many of the posters here will not respond to "old posts" .... this post was started about 2 years ago.
Thanks.
And by the way, I am an early stage OvCa survivor....I too have what they believe is ORS...I have developed a cyst, an ovarian cyst and have no ovaries.
As frustrating as it is for you Aspen,you cannot always blame the doctors. If someone has endo or lots of scar tissue and the ovaries adheres to it, it is very difficult to remove the entire ovary and even if one cell is left behind, it can multiply and cause issues.
Thanks.
And by the way, I am an early stage OvCa survivor....I too have what they believe is ORS...I have developed a cyst, an ovarian cyst and have no ovaries.
As frustrating as it is for you Aspen,you cannot always blame the doctors. If someone has endo or lots of scar tissue and the ovaries adheres to it, it is very difficult to remove the entire ovary and even if one cell is left behind, it can multiply and cause issues.
Hi Ladies,
I am new to the site too... have been replying to some of the ladies... I hope they are getting my posts/replys. I had a bowel obstruction January of this year too. Still don't know how i got it... I also wrote regarding anyone on the P.A.R.P. Inhibitor clinical trials
in South Florida... Anyone that lives in South Florida and knows of this clinical trial --
it would be appreciated if you can get back to me. Looking forward to hearing back from
all of you.... Be Well !!
Bebe709
I am new to the site too... have been replying to some of the ladies... I hope they are getting my posts/replys. I had a bowel obstruction January of this year too. Still don't know how i got it... I also wrote regarding anyone on the P.A.R.P. Inhibitor clinical trials
in South Florida... Anyone that lives in South Florida and knows of this clinical trial --
it would be appreciated if you can get back to me. Looking forward to hearing back from
all of you.... Be Well !!
Bebe709
After chatting with a friend tonight, she sent me the link to this site, and I'm not sure how she found it or anything, but right now I am thanking god she did!!!!
I am only 26yrs old. I have had a complete hystorectomy. In 2004 I had a tubal after giving birth to my daughter almost 8wks premature. A few months later my pain begain. The OB/GYN I was seeing, who had done my tubal etc. informed me he would NOT give me pain medication I could just go buy motrin, because I did not need anything stronger. There was just no way I was in te amount of pain I was telling him I was in. This led to me going through my PCP to have every test he could think of, and my seeing 3 other GYN's who all pretty much said the same thing. One suggested maybe endometriosis, which I had never heard of. He said doing exploritory surgery would help him determine if that wasmy problem. I said yes, and after the surgery he told me there was nothing there, but he felt I should go on this drug to treat it any way. I told him I didn't want to go on a drug if I really didnt need it, and he became angry with me. Someone I knew suggested I see their GYN so I amde an appt. he examined me, and told me he thought maybe the pain was from my uterus, but he wanted to do a CT and US to be sure. I was then that he found I had a cyst on my left ovary the size of a quarter. He said since it was causeing me so much pain I should have it and the ovary removed. I agreed, but questioned what would happen if he removed the left, and then the right started growing cysts. He said we would just have to deal with that if it happened. Less then a year later I rolled over in bed and just felt pain. I thought maybe pulled muscle since it was so sudden. I went to ER just to be safe, and wouldn't ya know now the right one had a cyst on it the size of a half doller. The GYN decided to go in and remove the right and cyst, with the possibility of removing my uterus because of the pain. When I awoke, he told me it was no wonder I was in so much pain. I had adhesions all over, attached to anything they could attach to, and so he had opted to remove everything I had left, and re attach things that had been pulled out of place by the adheisons. Less then a year later more pain, an other laporoscopy, more scar tissue, and on it went. I have been in pain again now for almost 2yrs, I went to the ER, and was told I had an ovarian cyst. I became angry and yelled at the dr's that they were diots I couldn't have an ovarian cyst with no ovaries!!! But all I was told is its an ovarian cyst. I went back to see my GYN who looked at the report and said its not my problem, I removed everything, and there for its a general surgans problem now. I went to the general surgen who wanted to again do surgery, which scared me t be frank! I had already had at least 1 surgery a yr since 2004!!! I refused and pushed my self to continue to work ( my husband is fully dissabled due to a back injury) when I could stand it no more I went back to the surgan a few months ago. At first he wanted to do nothing, then my ins. refused to allow me to have a CT scan done. I had hubby take me to ER and they did CT and told me again its a remanent ovarian cyst. Yet no one wanted to do anything to help me. No one still wants to do anything, they each say its not their problem its the others..........I have sat here tonight and cried, because I was begining to think maybe I was crazy, or the doctors were/ are crazy. Then I read all your storys and realized maybe I am not as crazy as I thought. I had planned to look for a new GYN tomorrow, and just keep going the way I am, but now you have given me something to ask them about, and I am ever so thankful!!!! The oain I am in is most days so unbareable I take pain meds and muscle relaxers and just sleep most fo my days because its the only time I don't hurt!!! Thank you all for sharing, nd makeing me see I am not the only one out there going through this!!!! Thank you more so for giving me hope and something to ask my doctors about now!!!!
**Aspen**
I am only 26yrs old. I have had a complete hystorectomy. In 2004 I had a tubal after giving birth to my daughter almost 8wks premature. A few months later my pain begain. The OB/GYN I was seeing, who had done my tubal etc. informed me he would NOT give me pain medication I could just go buy motrin, because I did not need anything stronger. There was just no way I was in te amount of pain I was telling him I was in. This led to me going through my PCP to have every test he could think of, and my seeing 3 other GYN's who all pretty much said the same thing. One suggested maybe endometriosis, which I had never heard of. He said doing exploritory surgery would help him determine if that wasmy problem. I said yes, and after the surgery he told me there was nothing there, but he felt I should go on this drug to treat it any way. I told him I didn't want to go on a drug if I really didnt need it, and he became angry with me. Someone I knew suggested I see their GYN so I amde an appt. he examined me, and told me he thought maybe the pain was from my uterus, but he wanted to do a CT and US to be sure. I was then that he found I had a cyst on my left ovary the size of a quarter. He said since it was causeing me so much pain I should have it and the ovary removed. I agreed, but questioned what would happen if he removed the left, and then the right started growing cysts. He said we would just have to deal with that if it happened. Less then a year later I rolled over in bed and just felt pain. I thought maybe pulled muscle since it was so sudden. I went to ER just to be safe, and wouldn't ya know now the right one had a cyst on it the size of a half doller. The GYN decided to go in and remove the right and cyst, with the possibility of removing my uterus because of the pain. When I awoke, he told me it was no wonder I was in so much pain. I had adhesions all over, attached to anything they could attach to, and so he had opted to remove everything I had left, and re attach things that had been pulled out of place by the adheisons. Less then a year later more pain, an other laporoscopy, more scar tissue, and on it went. I have been in pain again now for almost 2yrs, I went to the ER, and was told I had an ovarian cyst. I became angry and yelled at the dr's that they were diots I couldn't have an ovarian cyst with no ovaries!!! But all I was told is its an ovarian cyst. I went back to see my GYN who looked at the report and said its not my problem, I removed everything, and there for its a general surgans problem now. I went to the general surgen who wanted to again do surgery, which scared me t be frank! I had already had at least 1 surgery a yr since 2004!!! I refused and pushed my self to continue to work ( my husband is fully dissabled due to a back injury) when I could stand it no more I went back to the surgan a few months ago. At first he wanted to do nothing, then my ins. refused to allow me to have a CT scan done. I had hubby take me to ER and they did CT and told me again its a remanent ovarian cyst. Yet no one wanted to do anything to help me. No one still wants to do anything, they each say its not their problem its the others..........I have sat here tonight and cried, because I was begining to think maybe I was crazy, or the doctors were/ are crazy. Then I read all your storys and realized maybe I am not as crazy as I thought. I had planned to look for a new GYN tomorrow, and just keep going the way I am, but now you have given me something to ask them about, and I am ever so thankful!!!! The oain I am in is most days so unbareable I take pain meds and muscle relaxers and just sleep most fo my days because its the only time I don't hurt!!! Thank you all for sharing, nd makeing me see I am not the only one out there going through this!!!! Thank you more so for giving me hope and something to ask my doctors about now!!!!
**Aspen**
Hello,
I am new to forums but very happy that I am not alone. I had a hysterectomy in 2001, right ovary removal in 2004, and left ovary removal in 2006. The surgery in 2006 was also to clean out all the adhesions that had developed due to previous surgeries. I had a lot of problems post op which included having a reaction to the tape on my incision and the dr not wanting to touch it because he thought it was herpes, and finding out later that the dr was supposed to have been retired and had no business doing any more surgeries.
Between these times and now, I have had a total of eight surgeries due to pelvic and abdominal pain.
On 12/08, I had laparoscopic surgery to find out the source of my continued pain, and it was discovered that I had a bowel obstruction. The surgeon also discovered that half of my left ovary had been left behind. Since he was not an OB, he only took care of the bowel obstruction. He showed me pictures of the ovary which was 1.5 to 2cm. I now have a new OB who diagnosed ovary renmant syndrome. The thing that kills me is that i now have to have another surgery to take it out because of my previous OB's incompetence. If I had not had this last surgery, I would never have known about this. I thought the pain was in my head because previous drs have told me so.
PLEASE LADIES LISTEN TO YOUR BODIES AND HAVE A 2ND OR 3RD OPINION IF YOU HAVE TO.
I am new to forums but very happy that I am not alone. I had a hysterectomy in 2001, right ovary removal in 2004, and left ovary removal in 2006. The surgery in 2006 was also to clean out all the adhesions that had developed due to previous surgeries. I had a lot of problems post op which included having a reaction to the tape on my incision and the dr not wanting to touch it because he thought it was herpes, and finding out later that the dr was supposed to have been retired and had no business doing any more surgeries.
Between these times and now, I have had a total of eight surgeries due to pelvic and abdominal pain.
On 12/08, I had laparoscopic surgery to find out the source of my continued pain, and it was discovered that I had a bowel obstruction. The surgeon also discovered that half of my left ovary had been left behind. Since he was not an OB, he only took care of the bowel obstruction. He showed me pictures of the ovary which was 1.5 to 2cm. I now have a new OB who diagnosed ovary renmant syndrome. The thing that kills me is that i now have to have another surgery to take it out because of my previous OB's incompetence. If I had not had this last surgery, I would never have known about this. I thought the pain was in my head because previous drs have told me so.
PLEASE LADIES LISTEN TO YOUR BODIES AND HAVE A 2ND OR 3RD OPINION IF YOU HAVE TO.
This sounds like what i may be dealing with and just really wanting the pain to end .... In July of 08 I had a radical mastecomy on the right side with romoval of 13 lymph nodes (with 2 testing positive) and a modified radical on the left.. the same day I had a complete vagainal hysterectomy with removal of my ovaries tubes and uterus. I had a lot of stuck together things in there and dr gyn/onc was really wonderful... She was worried that she wouldn't be able to help me out ... But she did and the pain went away for about 2 months and now i too am having the same horrible symptoms i had b-4 my surgery... I have been throught tests just this week and the ct showed fine and the bone scan showed the left leg lesion is there but hasn't changed at all...
Dr schroeder did suggest a pelvic exam maybe should see about a tranvaginal ultra sound since the ct scan showed clear something is causing pain and pressures in my lower back and lower where my utererus ovaries would be...
i too know that this really is not the surgons fault and she was really wonderful...i have been blessed with good drs... now
he took me off the femera to see if that would help my symptoms any...
Dr schroeder did suggest a pelvic exam maybe should see about a tranvaginal ultra sound since the ct scan showed clear something is causing pain and pressures in my lower back and lower where my utererus ovaries would be...
i too know that this really is not the surgons fault and she was really wonderful...i have been blessed with good drs... now
he took me off the femera to see if that would help my symptoms any...
I am 49 years old and have an ovarian remnant on the left side from BSO 6 months ago. I am nearing menopause but am also a breast cancer patient. The gyn/onc refused to see me because I didn't have a cancer in the pelvic area. I don't know what to do now. I have no pain but rising hormone levels. Drs. think I am trying to cycle again. Does anyone know if this will stop once I go through menopause. I will go through menopause won't I.
mkIL
mkIL
I live in Crawfordsville, Indiana. I was told that there were only 5 gyn/onc in Indiana. Do you know if this is true? Where did you see your gyn/onc? Kasie
Does the IN in you user name mean you live in Indiana? If so, where at? I live in Indiana!! Kasie
Kasie,
That is crazy that you only live in Crawfordsville....wow. My work's biggest customer is in Crawfordsville and some of our salesmen live there. Small, small world!!!!
My gyn/onc is Dr. Michael Method in South Bend. He is absolutely wonderful. If you want more info, email me and I will tell you more. It's ***@****
Okay, off to bed now. Keep in touch, please!!!!!
Hugs, Dawn
That is crazy that you only live in Crawfordsville....wow. My work's biggest customer is in Crawfordsville and some of our salesmen live there. Small, small world!!!!
My gyn/onc is Dr. Michael Method in South Bend. He is absolutely wonderful. If you want more info, email me and I will tell you more. It's ***@****
Okay, off to bed now. Keep in touch, please!!!!!
Hugs, Dawn
I was just on the BBBC site, and found that you were the one who answered the post about my son's heart being broken. How ironic!! I will keep in touch!! Kasie
I can totally understand you not wanting to talk to your gyn about it. The one who did my surgery is still in denial. She says there is NOOOOOOOO way she left anything in there, but I have 3 pathology reports after surgeries to prove it is indeed ovarian tissue still being removed. I had to go to another gyn and then had him recommend me to a gyn/onc.
A general surgeon may not totally understand ORS like a gyn/onc does, therefore telling him/her may be futile. In my opinion, what you need to do is find another gyn who will order a transvaginal and abdominal ultrasound to see if you do indeed have a cyst or what looks like an ovary. The transvag US is the way all of mine were detected. Then, if you do have a cyst, then please, please get to a gyn/onc. They do delicate cancer surgeries every day and are more skilled at removing miniscule ovarian remnants than a general surgeon would be. Now, my surgery last year they had to call in a general surgeon to do a bowel resection due to maceration and scarring of the bowel. (I have since been diagnosed with Crohn's disease) but the ovarian part needs someone very experienced with adhesions.
Please keep in touch and let me know what you decide to do.
~Dawn
A general surgeon may not totally understand ORS like a gyn/onc does, therefore telling him/her may be futile. In my opinion, what you need to do is find another gyn who will order a transvaginal and abdominal ultrasound to see if you do indeed have a cyst or what looks like an ovary. The transvag US is the way all of mine were detected. Then, if you do have a cyst, then please, please get to a gyn/onc. They do delicate cancer surgeries every day and are more skilled at removing miniscule ovarian remnants than a general surgeon would be. Now, my surgery last year they had to call in a general surgeon to do a bowel resection due to maceration and scarring of the bowel. (I have since been diagnosed with Crohn's disease) but the ovarian part needs someone very experienced with adhesions.
Please keep in touch and let me know what you decide to do.
~Dawn
Hey Dawn, I am doing pretty good. How are you doing? Do you think I should mention this to the genreal sregeon I am seeing on May 23rd? I was very hesitant to mention it to my gyn, because I think she would be very offended that I am questioning her ability to do the surgery correctly. Unfortunately, I have a hard time with confertation and sticking up for myself. After all, she is the expert not me. What do you think I should do? Thanks for responding so quickly! Kasie:)
Hey Kasie,
How are you hun? The doc who originally removed my ovaries had no idea she had left pieces behind. But I have so many adhesions and scar tissue that the ovaries were adhered to the pelvic sidewall and apparently she couldn't get every single cell. And according to my gyn/onc, the tissue can regenerate and grow and produce hormones and form cysts. Even after multiple surgeries there is no guartantee they can ever get it all, which is where I am at now. Facing another surgery so soon. I am at the point where I feel I just need to learn to deal with the pain and quit having surgeries. I only get a couple of weeks relief anyway each time.
Sorry, wish I had more encouraging news but I don't. But I was told by my gyn/onc that alot of women have this and never know because they never have any symptoms. I am one of the un-lucky few that get the huge monster cysts from these stupid remnants. The good news is......when I would reach menopause age, it should stop. But that is about 20 more years down the road for me.
~Dawn
How are you hun? The doc who originally removed my ovaries had no idea she had left pieces behind. But I have so many adhesions and scar tissue that the ovaries were adhered to the pelvic sidewall and apparently she couldn't get every single cell. And according to my gyn/onc, the tissue can regenerate and grow and produce hormones and form cysts. Even after multiple surgeries there is no guartantee they can ever get it all, which is where I am at now. Facing another surgery so soon. I am at the point where I feel I just need to learn to deal with the pain and quit having surgeries. I only get a couple of weeks relief anyway each time.
Sorry, wish I had more encouraging news but I don't. But I was told by my gyn/onc that alot of women have this and never know because they never have any symptoms. I am one of the un-lucky few that get the huge monster cysts from these stupid remnants. The good news is......when I would reach menopause age, it should stop. But that is about 20 more years down the road for me.
~Dawn
Hey Dawn, I just went to the doctor last Thursday because I was having the same symptoms I was having pre-op (I am going on my 5th week post-op). She told me she thought I either had an incisional hernia, herniated disk in my back, or I was depressed and it was showing in the chronic pain I am having. I have to go see the general surgeon that assisted with my surgery to see what he thinks. Do you think I should bring up ORS? I have been questioning if I have this or not. Any info would be great. Did the doctors know that you had small pieces left when they did your surgery? Thanks in advance for any info you have. Kasie
Hi there. I was diagnosed with ORS not long after my surgery to remove my ovaries. I developed cysts on the remnants and have had surgery after surgery to remove pieces and cysts that keep forming. You may not have noticed them or had any symptoms initially because until they produce a cyst, you really would not even know they are there, they are so tiny. You can actually have microscopic epithelial ovarian cells that can grow and swell.
One way to tell if you have them, is to have a blood test to check your hormone levels (if you aren't on HRT...if you are, you have to stop taking them for two weeks, then get the blood work). If your estrogen levels are normal, you have ovarian remnants still functioning. That was what happened in my case. But for four years after my surgery I was on HRT (the highest dose of Premarin available) while my remnants were still producing enough hormones on their own. But my doctors didn't realize my remnants were functioning, so they gave me the HRT. I was pretty much getting overdoses of Estrogen (no wonder I was such a screwed-up, hormonal wreck)! My last surgery was done in January by a gyn/onc and he removed a cantaloupe sized corpus luteum hemmorhagic cyst along with more remnants and a piece of fallopian tube left in there. It was only about 8 weeks after this last surgery that I developed another cyst there. But, I am putting off another surgery and I am going to do the "watch and wait" thing for awhile. At least until it becomes completely unbearable...lol.
Hope some of this helps you, if not....thanks for taking the time to read my novel.....
~Dawn
One way to tell if you have them, is to have a blood test to check your hormone levels (if you aren't on HRT...if you are, you have to stop taking them for two weeks, then get the blood work). If your estrogen levels are normal, you have ovarian remnants still functioning. That was what happened in my case. But for four years after my surgery I was on HRT (the highest dose of Premarin available) while my remnants were still producing enough hormones on their own. But my doctors didn't realize my remnants were functioning, so they gave me the HRT. I was pretty much getting overdoses of Estrogen (no wonder I was such a screwed-up, hormonal wreck)! My last surgery was done in January by a gyn/onc and he removed a cantaloupe sized corpus luteum hemmorhagic cyst along with more remnants and a piece of fallopian tube left in there. It was only about 8 weeks after this last surgery that I developed another cyst there. But, I am putting off another surgery and I am going to do the "watch and wait" thing for awhile. At least until it becomes completely unbearable...lol.
Hope some of this helps you, if not....thanks for taking the time to read my novel.....
~Dawn
Hello, it is my understanding that a good tech doing ultrasound and trans-vaginal ultrasounds will give a better picture of what is going on in your pelvis than a ct does....maybe consider getting ultrasounds and a second opinion from a gyn/oncologist...they are certainly the best when dealing with abnormalities in women's reproductive tracts.
Regarding the time frame required for the development of ovarian remnant syndrome....maybe somebody else can help there. I am certain someone will happen by some time soon!
Peace.
dian
Regarding the time frame required for the development of ovarian remnant syndrome....maybe somebody else can help there. I am certain someone will happen by some time soon!
Peace.
dian
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