hi everyone, I would love your input on all this. It started in early August as breast and shoulder pain. The pain was awful I went to emerg and eventually had a mammogram no findings. From some ultrasounds I discovered I had gallstones, so I figured all my pain was from that-perhaps referred. Blood tests all good aside from liver enzymes which were 125 and then went down to 75. Pain goes away.
A week later I couldnt swallow as the airway felt constricted. I had an endoscopy they found gastritis. I changed to a baby food diet and healed. 2 weeks later I started urinating every hour during the night.. then the day. Then my vagina..or urethra starts hurting. I get period. I called the dr. He prescribed a urine test and some antibiotics for a uti. No findings other than blood in urine..antibio didnt work. So I see a urologist who says my "flow" was fine and to see if maybe Im constipated. So prescribed laxative. Later that day I get pelvic and transvaginal u/s which show polycystic ovary syndrome (did not show this a mth ago) Also an x ray which showed more than usual fecal matter in intestine.
Anyway tried laxative- didnt work- so now I feel like I have ovarian cancer. I am going every 30 mins to pee and when I finish the urge returns 10-30 mins later. I need a sleeping pill to get through the night.
Im feeling abdominal pain all over abdomen sides radiating from right to left side. I used to think it was the gall bladder but now Im completely stumped. Everytime Ive been to emerg (5x in the last 2 mths) the most they do are blood and urine tests and one abdominal u/s. All my doctor is prescribing are ultrasounds.
Also I have this massive pressure/burning pain on my vagina that lasts all day. Its been 2 weeks of this now. What do I need to do?
Ive tried contacting gynos they have 4-6mth waits one may be able to take me in mid- late oct but idk if I can wait that long Im a teacher i can hardly live like this running to the bathroom every 2 min. Im thinking- because I live in a small town- of heading to the city this week taking. Aday off and going to the city hospital to get thoroughly checked...ct scan etc.? Whats ur advice? Do my symptoms sound typical?
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The symptoms you described included some of the ones associated with ovarian cancer. However 1) there are a lot of conditions that can cause those symptoms, and 2) it sounds like you may have multiple indications making it more complicated to get diagnosed. I would seek out additional medical advice until you get some answers. If you can't see a doctor locally, then by all means go to the larger city. If they suspect ovarian cancer or want to try to rule it out, they will likely do a CA125 blood test, a bimanual internal exam, and/or a transvaginal ultrasound. While these tests aren't definitive, they are the best we have. Keep us posted. Best wishes, Gwen
Not necessarily. Some of us get diagnosed with CT Scans when they are looking for something else. But in the US the go to tests are usually the CA125, transvaginal sonogram, and the bimanual physical. Did they happen to do a CA125 when they did the blood tests?
I don't know much about POS. Have you looked into the symptoms of POS? A friend of mine was diagnosed with POS, Crone's disease, and something else and was in a lot of pain. It seemed to take forever for her to find answers and get relief. Hoping you can find answers soon.
I know it would mean travel, but I would get to a research hospital...Mayo Clinic, John Hopkins, etc. please keep us posted. Not knowing what’s wrong is the worst especially when you are suffering. Hang in there.
I had a ct scan done by a gyno-oncologist. I had tenederness in abdomen,cramping and did pee often when OC began. I thought it was IBS,symptoms similar. I had a urine test at the very first time I saw my GP about my symptoms. That showed normal and she said she didnt think I needed a CT scan at that time. Wasted two months before I was finally sent for the scan.First they did the Ca 125 blood test. That was elevated so they suspected possible OC. Urine test was not necessary and she should have sent me for a scan then.........dont let the docs blow you off..........insist on a scan now.It is your body and you know when something is not quite right!
Hi, I had the same thing happen to me. The docs couldn’t find anything wrong until I finally had a ct scan. I was already on stage 4 before that scan. My ca125 was high also. Wished that they would have done that scan earlier. My ultrasound was negative also. Months went by for me too. I should have never progressed to a stage 4. Now, I just had a blood transfusion, because Zejula made my hemoglobin too low. Now I’m off from that for a week and then another blood test. Don’t know what will be next.
Hi, go get a ct scan. They did an ultrasound on me and it was negative. The ct scan showed that my ovarian cancer had spread. I was already on stage 4. Wished that I would have gotten that scan earlier. Everything that I had before, kept coming up negative. Hope that you can find the problem. My ca125 test was also elevated to 158.
Will a CT scan see cancer cells ? I ask because my wife has a large tumor near her ovary/uterus scheduled to be removed next week. They don’t know what it’s attached to because of the large size it is obstructing the ct scan’s view. Her ca125 was also elevated at 203. The gyno-oncologist spoke with us and shared his concern that the tumor could be cancerous also saying that not all tumors are malignant. My wife authorized possible debulking and cancer staging during the tumor removal. But he never said that the ct scan showed cancer. An endometrial biopsy was also done but nothing showed. The doctor left me with more questions than answers. We are scared To say the least. And thank you for sharing, I have read all of your responses.
a suspicious area would show, if there is one. The radiologist reports his findings . That info is passed to your doctor. At beginning, I had a scan, it came back with suspicious neoplasm of ovary(s). The doctor then ordered up blood work, CMP, CBCand the CA-125. After all that, a biopsy confirmed it was cancer. Then the fun began...........chemo and doctor visits, pelvic exams and blood tests. Luckily, chemo did not bother me. That was a breeze for me. After chemo, 7 sessions, I was NED. Last scan showed a tiny area of something in urinary bladder/sigmoid colon as well but doc said it is too small and non specific. I was placed on Zejula, a PARP drug to keep things at bay.So far, so good. Been taking that since June. Blood tests are now monthly because of possible issues with Zejula.Snas every 3 months. This is how it goes. We can only hope we are one of the 20 % that never gets a recurrence.It will be a year , come the end of November that I had my last chemo session.I use to be so scared but now, its like, whatever. I cant change things. I get nervous waiting to see the Ca-125 numbers and hope they are low. A rising number COULD possibly mean a recurrence. It is what it is... just keep hoping for the best ! I wish you well.
I was on Zejula starting July 3. I was on 200 mgs. a day, but my hemoglobin dropped too low. I had a blood transfusion last week Thursday. They want me to stop it for 1 week and then have more blood work after that. I’m also negative for that BRCA gene. They said that this parp inhibitor isn’t as affective with me, because I am negative. Don’t know what will be next.
I am also negative with the gene and zejula is suppose to be less effective. I wondered why then take it and have possible serious side effects? I still wonder that but the docs scare you........they insist you take a PARP to keep cancer from recurring. I wondered how would they know if it helped if they have you take it BEFORE any recurrence??? If a person doesnt have a recurrence for a year or so, will they claim its the Zejula that did that? They really wouldnt have anything to base that on. I resisted taking it and then in June, they kep telling me it should be taken to keep things at bay... I gave in. They scare you . Zejula costs a fortune and you have to go thru funding in order to get it . Is it all about the money? I sometimes wonder.Oh well, luckily my numbers are good.......slight low platelet count but everything else is normal in blood work. I know one must have trust in their doctors but over prescibing medications is a real issue in the medical field and it is because of $$$$$$ being made. Call me skeptical !! LOL
Hi, I wonder too about this Zejula. I don’t know what they will do after my next blood test. They might lower my dose to 100 mgs. a day, or they might put me on something else. I agree with you on if the medicine holds it back or would I be ok if I didn’t take it. I was on stage 4 before 7 chemos and major surgery. After that, they said I was NED. Just wonder about everything lately. I guess it can be common to have your blood go down while on Zejula. I know I felt terrible with that side effect. I’ll see what the doc will do with me next week. Everything is big $$ for sure.
That's what Phase 3 clinical trials are for. They have a large number of people and about a third or half are given a placebo. Then they compare the results, like time to progression of the cancer. The results for those with HRD (homologous recombination deficiency including brca and other mutations) have been outstanding.
Well i think you are right get to large city emergency room. None of this is normal you need global workup by someone who knows what to do. So sorry you are going through this. Big hugs from france
A lot of this sounds very familiar. Especially the bladder frequency, burning and pain that radiates, sounds like IC or Interstitial Cystitis. It can be horribly painful. I have to get my bladder “cleaned” every couple of years. There is a special diet for it. I know in the states the ER will not be of any help, but if you mention it to your Gyn, General doctor or urologist any one of them should be able to tell you if they think it’s IC. Also like it could be endometriosis. I’ve had both. Too be honest, I would think someone needs to do a diagnostic laparoscopic surgery. That way the can actually look to see if there is OC, IC and/ endometriosis. I know with all of them they can’t always be seen.
Aloha! Sorry to hear about all that craziness that you are experiencing. I had the urinary symptoms that you are describing and it turned out to be ovarian. If you can't wait for the dr appt., then go to the emergency room. They should run all the necessary tests to figure this out. You don't want to wait any longer than necessary because you don't want to develop ascites if it is ovarian. Many female conditions present with your symptoms, but the urinary thing is concerning. Since your still trying to figure this out, I'd request a PET and a CT scan. Wishing you resolution and the best.
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