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Endometrioma or OVCA? Endometrioma or OVCA?

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Unread 07-07-2004, 06:23 PM
Endometrioma or OVCA?

First of all let me say that I have great admiration for all the courageous souls that have posted on this board! I have spent several hours reading posts, laughing AND crying! What a fantastic website!!

I have several questions...hope I'm in the right place. Like I said, I have been reading posts but haven't come across anyone yet with the same symptoms. But here's a little history...I apologize for the long post.

I'm 39 w/2 kids. Never have had any gyn problems. But for the last year I've had increasing gas pains (I thought) in upper abdomen during my period and painful bowel movements. Then late last year I would feel like I had the flu w/low grade fever during my period. But this spring the pain and fever got worse where I could not hardly get out of bed, & missed worked. I would have ovarian pain and then the intense (gas?) pain all over my whole abdomen that would last a couple of hours then my abdomen would get so tender, I could hardly touch it and I had to walk very gingerly. The tenderness lasted almost a week, increasingly getting better day by day. The tenderness is mostly around my belly button. I saw my GP. She sent me for US (gall bladder and pelvic). The pelvic showed a couple of cysts on left ovary, some small fibroids, retroverted uterus and an enlarged right ovary. Saw the gyn, he gave me script for BC. I asked about enlarged ovary and he said it was nothing. I asked about the fever, and he didn't know what it could be. Needless to say, I didn't fill the script for BC, I felt like there was something more going on. Next couple of periods pain was not too bad and no fever, until June. Ended up in ER. Ran labs and did CT. CT showed an endometrioma the size of a large grapefruit. HOW could this have been missed on US in April??? Do endometriomas grow that fast?? Anyway, saw a different gyn. She did a CA125 (elevated, 121) and another pelvic US and transvaginal US. This US showed that the "mass" was complex. She has referred me to a gyn/onc, suggesting TAH/BSO. My questions are: Has anyone ever ran a fever with endometriosis? or OVCA? My gyn would do the TAH/BSO with the gyn/onc standing by. She's only been a surgeon a couple of years. Should I just have the gyn/onc do the surgery herself? I'm freaking out about all this because I've never had any problems prior, I can't believe I could be having a TAH/BSO in the next couple of months. I can't get into the gyn/onc until late August, should I wait or seek out another gyn/onc? Can anyone suggest any "good" gyn/onc in missouri or kansas?.

Thanks for taking the time to read "my" story. I know I will get some questions answered here.
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Unread 07-07-2004, 07:04 PM
Endometrioma or OVCA?

Hugs to you dear one! I can understand what you are experiencing. I had an ultrasound that showed a large cyst and my CA-125 came back elevated. My Dr was quite concerned and seemed to think it could be ovarian cancer because he didn't think I was complaining enough for it to be endo. My periods were painful but I accepted it as normal. I thought everyone swallowed Advil like they were M&M's when they had theirs! Anyway my surgery revealed a grapefruit sized endometrioma and a couple days later I had a fever of 100. The DR made the comment that he was not overly concerned because he said that anytime you cut into endo a person can run a low grade fever for as long as 10 days. I know you said you run a fever with your period but maybe that's possible with endo. I know you are scared and believe me I was too but hang in there, your sisters are here for you.
Unread 07-07-2004, 07:16 PM
Endometrioma or OVCA?

Hi! My name is Stephanie. I wouldrecommend a GYN oncologist do the surgery. It could save your life. This kind of MD is the most skilled. Also, I would seek another GYN oncologist that can see you before the end of August.

Here is my story:
I had severe abdominal pain with my period July 2003. It was a Sunday. I was driving to a patient's house (I am a home care RN) and was not near one of the hospitals that I could go to with my insurance. The pain decreased and I went home. Saw my primary MD (a woman) the next day. She did an abdominal physical assessment and found no problems. She said to come back in a week. I did-since I had no pain at this time, no tests ordered. September 2003, I developed pain left abdomen and noted a mass right abdomen. Went to primary MD. I had also been gaining weight and had heartburn. CT scan showed large mass. CA-125 209. Went to GYN oncologist 4 days later. Had TAH/BSO 9/26/03. Biopsy during surgery showed tumor of low malignant potential. But final pathology report showed ovarian cancer. I finished chemo 3 months ago. I'm in remission now.

I truly hope you don't have ovarian cancer. But, if there is a problem besides endometriosis, you will be glad that you had surgery by a GYN oncologist. Women with ovarian cancer who have surgery by a GYN oncolgist live longer than women who had surgery by other surgeons.

Good luck! Let us know how you are.

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Unread 07-07-2004, 07:26 PM
Endometrioma or OVCA?

If you lived on Long Island in NY I could definately reccommend a wonderful oncologist/gyno but you live a little too far away.

However, I do feel that you should see one as soon as possible. They are experts in this field and will know exactly what to do.

Please keep us up to date.

Unread 07-07-2004, 07:44 PM
Gyn/Onc is the Way to Go

If there is any reason to suspect cancer, then the gyn/onc should be doing the surgery. I hope that your surgery will show all is benign.
Unread 07-07-2004, 08:12 PM
Endometrioma or OVCA?


There's no reason not to have t he gyn onc do the surgery. With an elevated ca-125, and a complex cyst, the insurance company with pay for the gyn onc, so why not get the expert?

If all is well - and it is just as likely to be - you can go back to your regular gyn for follow-up care. If g-d forbid it is cancer - then the expert did the initial surgery - which studies have suggested, for ovarian cancer in particular - can save your life! Gyn-oncologists have better long term results than regular gyns do for ovarian cancer. None of us are really sure what "standby" means - and sometimes, especially with early stage ovarian cancer - it may not be clear if you do have cancer in the OR. ((Stephanie)) got her dx after the final pathology, and I got mine after the 2nd pathologist reviewed inconclusive tissue. In these cases, the gyn onc will do a complete staging.

In the meanwhile, I would try not to worry so much. Endometromas can cause very high ca-125s. ((AudreyS)) had that situation. And by the way - gyn oncologists are often the "surgeon of choice" to do surgery on patients with endometriosis. Since endo can grow all over the inner abdomen, the surgical method for removing it is not unlike what is done for ovarian cancer.

Unread 07-08-2004, 03:23 PM

just an update...the gyn/onc that i was supposed to see in august called...after reviewing my reports/records, has decided to fit me in on the 20th of this month. good news is...i get to maybe get this over with sooner, bad new is...i miss the fish fry for a retiring co-worker wahhhh! i love crappie!! maybe they'll save some scraps for me

anyway, i know now, with the help of you wonderful ladies that i will be requesting that the only surgeon to do my surgery will be a gyn/onc. thanks for all your wisdom, too bad it has to come from experience!!

Unread 07-08-2004, 05:30 PM
Endometrioma or OVCA

Hi, my name is Diane. I have been reading these post since March 2003 in hopes of finding someone with a similar situation as myself and you have been the only individual that is presenting with the same symptoms that I am having.
In March of 2003 I had a menstrual cycle that lasted for a month. I have been having abnormal pap smears since 2001 and have a strong history for breast cancer due to my mother dying of breast cancer at the age of 53. I was also having a spontaneous nipple discharge in my right breast at the same time all this presented itself. I also was running a low grade fever and continue to do so, as a matter of fact, today I have a temp of 100. I also have tremendous gas pains and honestly I wonder where in the heck it comes from. Unlike you my ovaries do not hurt during my cycle instead it is during ovulation. I have a high tolerence for pain, but when this pain comes on I have to use a heating pad to sustain the pain along with ibuprofen(800 mgs).
I live in Texas and the best cancer center is in Houston at M.D. Anderson and I felt with my family history I would make the 100 mile drive. I also had a cyst on my right ovary, fibroids, and ca125 was at 50. I had a duct excision in my right breast in November 2003 and the pathology was a papiloma and atypical ductal hyperplasia. I thought this surgery would eliminate the flu like symptoms that I was having but it has not happened. I see a gyn/onc at M.D. every six months to monitor my abnormal pap smears and they don't seem to be concerned unless it comes back with CIN which I have had before. I am 46 and have always been in good health with lots of energy, but this last year has taken a toll on my body and I still feel lousy. Sorry to ramble on and on but I was indeed anxious to talk with you. If you would like to email me it is ([email protected]) and maybe I can ease your mind. Even though I still feel that something is going on in my body(you know the feeling when something is just not right) however; I know that I am in the best possible care. I hope that all turns out O.K. for you and I will keep you in my thoughts and prayers along with all of the other courageous women on this board! Girl power to us all!
Unread 07-08-2004, 08:09 PM
Endometrioma or OVCA?

Hi, I read your posting and am feeling the the same way. I am 45 with 2 kids with history of endometriosis (had endometrioma and had right ovary removed laproscopically 2 years ago...benign). I now have 8 cm cyst with CA125 that has gone from 25 to 90 in the past 6 months and have TAH scheduled for July 16th - like you I am very anxious about cancer possibiity. I guess we will not know until the surgery. Am glad you are going with gyn/onc - it really does give me more peace knowing that she is a specialist...and sees this stuff all the time.

Not much in the way advice - other I am thinking of you and can relate.....Thinking of you
Unread 07-13-2004, 03:35 PM
Endometrioma or OVCA?

HI smltwn---

I am new at posting things and should have found this website last year when I really needed it. I had emdometrial cancer last summer and had a D & C on July 3, 2003 and TAH and both overies taken out along with lymph nodes from groin area on July 17, 2003. I have an excellent GYN/ONC from the St. Louis area.
P M me if you would like more info.

I would agree with others that a GYN/ONC is your best bet.
I have great hospitals in my own backyard, but it may be wise to get a second opinion.

I was told that I had cancer the Monday after July 3 last year and called for an appointment on Tuesday and saw my GYN/ONC that Wed. and had surgery a week later on Thurs.

Please PM me if you would like more info.


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