Can any one give me an idea

[armywife507]

I am a 26 year old mother of 2, I was diagnosed with Polycystic ovaries when I was 17.  About 2 months after I had my first son in 2006 I started getting bad pain in my stomach like all of my abdominal muscles tighten up and I can hardly stand the muscles get so tight its hard to breath, and the tight muscles squeeze my stomach which forces me to throw up with out warning this has been going on for 4 year its not a constant thing every few months or so.  After my second son was born in 2008 the same problems continued followed by, weight loss I was breast feeding so that was part of it im sure after I stopped breast feeding I went from about 120 to 95 pounds in just a few months (I am currently fighting to stay at 110) despite eating regular meals and snacks all day.  My periods went crazy (normal after pregnancy I know) but almost 3 years after my last child was born they are still crazy also in 2008 I had my tubes tied.  My current symptoms are  lactation, frequent urination, constant back pain, bloated, periods of nausea, mild abdominal and ovarie pain, no matter how much I sleep I am always tired, my lower belly sticks out as if I am pregnant, also on the right side around my ovaries there is a mass which continues to get bigger.  In the last 4 years I have been to the ER a few times because of the muscle tightening and nothing, I had the CA-125 test done in 2008 normal I was treated for chrones disese but no change, also IBS no change, I have had so many blood test I feel like a pin cushion and CT scans, sonograms, abdominal and pelvic ultra sounds, barium CT, exrays and everything comes back normal.  I am at a loss, I am having all of the problem and so many test done but still no answers.  I am scared that it could be ovarian cancer and it wont be diagnosed until it is to late.  Has anyone who has been diagnosed with OC had a lump or mass they could feel around or on their ovaries?

[manneca]

I would keep pushing until you get a diagnosis. I had a horrible experience with doctors telling me it was my imagination. I looked 6-7 months pregnant. My sister knew immediately when she saw me what it was because she had a friend with ovca. My CA-125 was normal. My transvaginal ultrasounds were normal. It only showed up on a CT scan when one doctor agreed with me that something was wrong.

Find a gyn/oncologist. Go to a center that specializes in cancer. After my surgery (by a general surgeon, but it seems to be OK, I don't recommend that route) I asked the oncologist how many ovcas she saw in a year. She answered one or two. I now travel back to the big city my son lives in for a national cancer center and a gyn/onc who does research in ovca.

[kcd86]

What has the transvaginal sonogram showed? What has the CT scan of the abdomen and plevis showed?. It would seem to me if you have "cysts" on your ovaries and you have all the symptoms you are saying especially lactaion and irreg peroids warrants further investigation. Just because your CA-125 was normal does not stop further investigation to why you are lactating and have irreg periods. You need to have your blood drawn for Inhibin A&B, MIS and a CEA.
I am sorry you have to go threw this it is very stressfull to have this hanging over your head. Below is an overview of ovarian cancers, read this as a guide to help you understand ovca.

My wife was recently Dx with granulosa Cell cancer( GCT) Jan 2010 and I know what it feels like to not know what the next step is. Here is a quick overview.

Tests like sonograms, Cat scans and MRI's along with blood tests like CA125, Inhibin A&B, MIS and CEA are just used as a guides for the Dr's to help assist in making a diagnoses(Dx).
The blood test CA-125 is a test used by Dr's as a guide to determine if you have the most common form of ovarian cancer, approximately 80% of all ovarian cancers are epitheal ovarian cancer which is cancer of the cells on the surface of your ovary. Please keep in mind that CA-125 can be elevated if your menstruating and some other causes of inflamation,conversely CA-125 can be low or zero if you have other forms of ovca.
There are other types of ovarian cancer that are hormone driven and depending which form a person has there will be excess symptoms of that specific hormone. This is the type my wife was Dx with granulosa cell ca. These group type are called sex cord -stromal tumors. These type of tumors have specific markes that the Dr's use just like a ca-125 to aide in their dx of epitheal ovarian ca. These are Inhibin A&B and MIS. Please keep in mind if and only if you have a dx of these form of tumors there is a missconception that these tumors are always benign, which is completely false> They are just slow growing tumors as opposed to epitheal.
Unfortunately with any type of suspected ovarian mass/tumor/ suspicious cyst(s) surgery will be the only way for the Dr's too make a definitive Dx.
*****It is NOT recommended to biopsy any ovarian mass/tumor/suspicious cyst as it can rupture and seed the pelvis with cancer cells if that what it turns out to be. **********
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Since there is some suspicion  I would immediately find a good GYN/Oncologist surgeon. I am not suggesting what you have is cancer but studies have shown that treatment of ovarian cancer by nongynecologic oncologists and by low volume surgeons is associated with suboptimal surgical management. I would reccomend going to a large tiertiary hopsital where they see large volumes of patients.  This is not to make you worry even more but to make sure that the Dr who treats you has vast experience with diagnosing and treating various types of GYN / Onc issues if that is what it turns out to be. If the Dr wants to remove the cyst/mass via laprascopic procedure #####PLEASE make sure they have much experience with removing these INTACT! All too often I read posts from patients who say their Dr thought it was a cyst and removed it haphazardly causing a rupture and seeding of the pelvis with cancer cells, only to be found on pathology post removal. ######
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Next: From experience I would be asking for an MRI of the abdomen/pelvis ,MRI's are very precise when read by a **Radiologist that specializes in GYN/ONC**, My wife went to a radiology practice that does all types of MRI's and the Radiologist read her MRI as a fibroid. I then took her to Sloan Kettering in NYC to see a GYN/ONC surgeon Dr Carol Brown(excellent) who had the MRI repeated by a GYN/ONC Radiologist who called her DX to the tee which was confirmed after surgery.
The best advice you see all over these posts is you have to be your own advocate, be aggresive and stay on top of your phycicians. Get copies of all your tests/results as you are entitled to them. Post with any other questions you have this site has some very knowledgeable people on it. I wish you all the best.
Kevin